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The Nocebo Effect

The Nocebo Effect

Overdiagnosis and Its Costs

Stewart Justman
the nocebo effect
Copyright © Stewart Justman, 2015.
Softcover reprint of the hardcover 1st edition 2015 978-1-137-52328-0

All rights reserved.


Contains excerpts from Notes from the Underground and The Gambler by
Fyodor Dostoyevsky, translated by Jane Kentish (1991). By permission of
Oxford University Press. www.oup.com

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First published in 2015 by PALGRAVE MACMILLAN in the United States—a
division of St. Martin’s Press LLC, 175 Fifth Avenue, New York, NY 10010.
Where this book is distributed in the UK, Europe and the rest of the world,
this is by Palgrave Macmillan, a division of Macmillan Publishers Limited,
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ISBN 978-1-349-57677-7 ISBN 978-1-137-52329-7 (eBook)
DOI 10.1007/978-1-137-52329-7

Library of Congress Cataloging-in-Publication Data


Justman, Stewart.
The nocebo effect : overdiagnosis and its costs / by Stewart Justman.
pages cm
Summary: “The Nocebo Effect documents the transformation of normal
problems into medical ones and brings out the risks of this inflationary
practice. One notable risk is that people labeled as sick may find themselves
living up to their label through the alchemy of the nocebo effect”—Provided
by publisher.
Includes bibliographical references and index.

1. Placebos (Medicine) 2. Medicine and psychology. 3. Negativism.


I. Title.
RM331.J86 2015
615.5—dc23
2015007677
A catalogue record of the book is available from the British Library.
Design by Amnet.
First edition: August 2015
10 9 8 7 6 5 4 3 2 1
Contents

Acknowledgments vii
Preamble: Indefinite Ailments and Inflammatory Messages ix

1 DSM and the Shaping of Depression 1


2 The Ills of Health 39
3 Searching for Signs 71
Interlude: Medicalization and Magnetism 89
4 Overdiagnosis and Its Harms 93
5 Name Games 121
6 Beware What You Look For: Two Cases of Medical Activism 143
7 The Folly of Systems: The Satiric Tradition and Mental
Disorders 169
8 The Malady of Awareness 195

Epilogue: Return to Sources 207


Notes 215
Index 269
Acknowledgments

The author is immeasurably indebted to Frederick Crews, John Haller,


Barnett Kramer, John MacKinnon, and Derek Summerfield.
Preamble: Indefinite
Ailments and Inflammatory
Messages

I n the course of Plato’s Republic Socrates distinguishes two kinds of


medicine, one an art worthy of its founder Asclepius, the other a
perversion. The true physician, the scion of Asclepius, treats definite
ills in definite ways. He cures wounds, for example, his technical skills
justifying the analogy of physicians to carpenters, pilots, and musicians
elsewhere in the Republic. The sham physician flourishes in an unhealthy
city by pretending to treat the more or less imaginary ailments cultivated
by citizens with nothing better to do. (“With the rich man . . . we do not
say that he has any specially appointed work which he must perform, if
he would live.”) Instead of healing wounds or coming to the aid of those
caught in an epidemic—which, while dreadful, is at least not imaginary—
the sham physician invents names for the “waters and winds” that seem to
fill those who lead empty lives.
Shortly before this discussion of medicine and its corruption, Socrates
emphasizes that in a healthy city each citizen plays one and only one part:
a shoemaker is a shoemaker “and not a pilot also . . . and a soldier a soldier
and not a trader also, and the same throughout.” An identical dislike of
mixtures appears to inform the Socratic view of health. One is either in
health or not. When a sensible man—one who doesn’t have the luxury or
inclination to devote himself to being sick—falls ill, he either gets well in
the natural course of things “or, if his constitution fails, he dies and has no
more trouble.” The fantasist who consults physicians for his various winds
and waters has made illness itself his way of life. If dialectic searches for
contradictions, such a life is an enacted contradiction in its own right, an
absurdity in the eyes of reason.
While the principle that you’re either one thing or another—either
sick or healthy—may seem like common sense, in reality it’s misleading.
Normal health includes ills of many kinds, even ambiguous early forms
of cancer, which is why those who seek to expand the domain of medi-
cine are guaranteed to have plenty of material to work with. According to
x PREAMBLE

Socrates, Asclepius concerned himself only with persons who had “a defi-
nite ailment.” A lot of the ills that disturb us even in health are indefinite,
though they can acquire a semblance of specificity by taking on clinical
names. It may indeed be unwise, as Socrates suggests, to fixate on one’s
ills—not, however, because there’s nothing there but because there is, and
because symptoms can be magnified by the interpretations imposed on
them by doctors and patients.
In order to figure in the marketplace, many of the ills troubling our
minds and bodies have to lose the ambiguity that seems to belong to them.
“Compared with the reality which comes from being seen and heard,”
wrote Hannah Arendt, “even the greatest forces of intimate life—the pas-
sions of the heart, the thoughts of the mind, the delights of the senses—
lead an uncertain, shadowy kind of existence unless and until they are
transformed, deprivatized and deindividualized, as it were, into a shape
to fit them for public appearance.”1 Still more obscure are complaints so
potentially indeterminate that we might report them in different ways—as
chronic fatigue or fibromyalgia, for example—depending on what diagno-
sis happens to be in favor, or we might not report them at all. Precisely
because such internal events lack the confirmed character of things seen
and heard in public, they are highly subject to interpretation and, in fact,
distortion. The inside of our being is the ultimate Platonic cave of shadows.
When problems of mind and body are brought into the public realm, sub-
jected to the shadowless light of the media, and made the topic of campaign-
ing, controversy, and salesmanship, ill-defined events to which there may be
no witness but oneself are transformed into a cause célébre. In recent decades,
many common problems have been elevated into medical issues in this way,
in the process acquiring both evocative names and large constituencies. Ills as
well as goods can be shaped from raw materials, packaged, and popularized.
But once ambiguous ills inherent in human existence are labeled—branded—
as a consequence of medicalization, the experience of having them in the first
place can change. Waters and winds cohere into storms.
Once having entered the marketplace, ideas about illness are capable
of stirring up illness itself through the power of the nocebo: the neglected
twin of the placebo effect.

A society’s ethnomedicine tells societal members what sicknesses there are,


how they are acquired, how manifested, how treated. The nocebo phenom-
enon suggests that the categories of an ethnomedicine may not only describe
conditions of sickness, but may also foster those conditions by establishing
expectations that they may occur. Thus, a cultural system commonly thought
to serve a healing function may also have a contrary outcome, fostering the
same pathologies intended to be healed.2
PREAMBLE xi

I will argue that medicalization promotes harm under the auspices of heal-
ing, both by marketing disorders (“fostering the same pathologies intended
to be healed”) and distorting the calculation of harms and benefits.
The quoted author concludes that in order to avoid triggering nocebo
effects, “We must be cautious in both public health communications and
in clinical medicine.” Ironically, in the same year in which this admoni-
tion was issued, direct-to-consumer advertising became legal, and there
ensued a flood of suggestive messages urging us to consider the possibility
that we might be sick. In addition to such ads, messages that simply vio-
late caution are among the power sources of the medicalization movement.
Announcements that populations of staggering magnitude suffer from
undiagnosed disorders—that one in twenty may have bipolar disorder (a
figure five thousand times the prevalence of what used to be called manic-
depressive illness);3 or that one in eight Americans suffers from social anxi-
ety disorder;4 or that as much as 24 percent of the population suffers from
“depressive symptoms in various combinations”;5 or that a quarter of the
population of New York City was in need of psychological treatment fol-
lowing the 9/11 attacks;6 or that 43 percent of all women suffer from sexual
dysfunction;7 or that half of the US population will at some point meet
the requisites of a psychiatric disorder;8 or that half of American men are
“sexually dysfunctional”;9 or that “as many as 72% of people in the work-
force are depressed”;10 or that “three-quarters of the general public will
experience an event that could cause a traumatic response sometime in
their lifetime”;11 or that 82.5 percent of young people will qualify for a psy-
chiatric diagnosis by the age of 21;12 or that depression will soon be the
second leading cause of disability around the world13—announcements
like these, the very opposite of cautious, provide the themes, banners, and
rallying cries of medicalization. Inevitably quoted again and again, their
exaggerations building on one another, they are symptoms of an informa-
tion epidemic that itself defies all limits.
1

DSM and the Shaping


of Depression

Chapter and Verse

A received opinion in medical literature holds that Asians are prone to


present psychiatric problems as physical complaints—depression as back-
ache. Implying as it does that Asians lack a proper understanding of what
ails them or, if they do understand, hesitate to call it by its right name,
this dogma enshrines prejudices and misreadings as medical facts. If
Asians have trouble speaking the foreign language of psychiatry, the rea-
son may well be that they still possess traditional ways of managing ills
like those now bundled into the diagnosis of depression.1 Cultures with
tighter norms of self-restraint, which index stronger social institutions,
will struggle to translate the concept of depression arising in a way of life
whose theme is the free expression of selfhood.2 On this showing, psy-
chiatry is the last man standing after the more communal supports of
human life, from the family to the church, have been shaken by the rapid
advance of Western individualism. Arguably, common problems come to
be defined as psychiatric issues in the first place when the institutions in
which we live fail us. Psychoanalysis itself arose amid the utter and com-
plete collapse of the credibility of the public world in the twilight years
of the Austro-Hungarian empire.3 So too, it was in the aftermath of the
crisis that convulsed all American institutions in the 1960s that the gen-
eral population, not just the seriously ill, came to be considered as the
constituency of psychiatry. Psychiatry emerged from the turbulence of the
times with a new authority—the authority codified in the American Psy-
chiatric Association’s directory of mental disorders, the Diagnostic and
Statistical Manual (DSM). That this volume is colloquially referred to as a
bible is itself a reminder of the displacement of traditional institutions by
psychiatry.
2 THE NOCEBO EFFECT

Not until the publication of its third edition in 1980 did the DSM attain
its status as the final arbiter, the bible, of mental disorders; before that it
was a little-known, spiral-bound document reflective of the psychoanalytic
assumptions then in the ascendant. The gulf between DSM-II and DSM-
III might be measured by the difference between “narcissistic personality
disorder” and “Major Depression,” the former a diagnosis popular in the
1970s but not listed in DSM-II,4 the latter a diagnosis popular ever since,
anchored in the chapter and verse of DSM-III and its successors. It was
to abolish obscure theorizing about the origins of psychological problems
and to put diagnosis on a solid foundation that DSM-III introduced the
system of tabulating symptoms that reigns to this day. According to this
scheme, a symptom isn’t the manifestation of a problem deeply rooted in
the patient’s early history, as in Freud, but simply evidence of a disorder—
a disorder, not a neurosis. Streamlined by comparison with the cumber-
some machinery of Freudianism, the DSM system possessed an appealing
straightforwardness and a how-to emphasis that recommends itself to
practical minds as Freudian doctrine never could. The product of a zeal for
renewal, DSM-III was American psychiatry’s Reformation. Said a member
of the DSM-III Task Force, “A lot of icons were being smashed.”5
In the words of its designer, Robert Spitzer, DSM-III gave psychia-
try “a fresh start.”6 Animated by this spirit of reform, the framers of the
document eliminated the anarchy that allowed clinicians using diverse
theories to arrive at conflicting diagnoses, and in its place installed a set
of explicit standards written in clear language, without esoteric suppo-
sitions, all intended to bring different observers to identical diagnostic
conclusions. It bears emphasis that precisely as an exercise of system-
building, DSM-III was inspired by a rejection of the confused state of
existing psychiatric judgments. A few years before work started on DSM-
III, a study was published in which young psychiatrists “were no more
likely to agree with an examiner’s diagnosis of a patient than would be
expected by chance.”7 Reporting to President Carter in 1978, the Com-
mission on Mental Health acknowledged that “opinions vary on how
mental health and mental illness should be defined.”8 For a discipline
either claiming or aspiring to the status of science, such bedlam was
intolerable. At the same time, insurance companies and powerful figures
in Washington let it be known that they had no faith in psychiatry’s abil-
ity to explain and defend its findings. In this state of affairs, DSM-III
served to restore and even enhance the credit of psychiatry by acting as
a manual for the making of diagnostic judgments. Over the years since
1980 the edition of the DSM that happens to be in force has been the last
word on the diagnostic criteria of mental disorders, its influence incal-
culable and its authority cited in the medical literature, courtrooms, and
DSM AND THE SHAPING OF DEPRESSION 3

elsewhere. And so, from the chaos of conflicting opinions rose the reli-
able judgments of the DSM system.
The priority of the need to replace capricious judgments with systematic
ones is confirmed by Spitzer, who in 1999 wrote:

An innovation in the third edition of the American Psychiatric Association’s


Diagnostic and Statistical Manual of Mental Disorders (DSM-III), carried
over into DSM-III-R and DSM-IV, was the presentation of diagnostic cri-
teria for the identification of each of the specific disorders included in the
manual. While the immediate goal of including such criteria was to improve
reliability by minimizing criterion variance, the ultimate goal was to help
clinicians and researchers make valid diagnoses by minimizing both false
positives (instances in which individuals who do not have a particular men-
tal disorder are mistakenly diagnosed as having the disorder) and false nega-
tives (instances in which individuals with a particular mental disorder are
mistakenly diagnosed as not having the disorder).9

The assumption here, the same assumption that seems to have driven the
construction of DSM-III, is that systematizing the diagnosis of mental dis-
orders would lead to better outcomes in the form of fewer false positives
and negatives. Fewer false positives? Far from reducing false positives, DSM-
III so multiplied them that Spitzer’s successor Allen Frances, chair of the
DSM-IV Task Force, indicts the document he inherited on that very ground:
“Diagnostic inflation has been the worst consequence of DSM-III.”10 Indeed,
Spitzer himself has commended a book that deplores the overdiagnosis of
depression as a direct result of the DSM diagnostic system.11 Evidently it’s
possible to systematize the diagnosis of a disorder like depression (first codi-
fied in DSM-III, and now the most researched of all psychiatric conditions)
while not only failing to rein in, but fueling, bad diagnoses. Even though the
DSM-III diagnostic scheme was framed on a medical model in accordance
with the desire to return psychiatry to its identity as a medical discipline,
somehow the first principle of medicine—avoiding harm—was overshad-
owed by the imperative of reducing “criterion variance.”
What if many doctors arrive at the same inflated diagnosis? (Inflation
is a collective event, after all.) The likelihood of inflation was wired into
DSM-III if only because its categories were used to determine the preva-
lence of disorders in the community at large, and those findings were cited
in turn by the American Psychiatric Association (APA) in lobbying for “the
necessary resources.”12 It’s diagnostic inflation that makes possible vast
markets for psychoactive drugs addressed to DSM-defined disorders, such
as depression, social anxiety disorder, and attention-deficit/hyperactivity
disorder (ADHD), the latter two DSM coinages. If diagnoses like these are
now spreading around the world “with the speed of contagious diseases,”13
4 THE NOCEBO EFFECT

this is only because the constituent symptoms, including sleep problems,


fatigue, inattention, and, in the case of depression, sadness, are universal
as well; they are so much a part of common experience that they can be
found anywhere.

A Diagnostic Catch-All

The makers of the DSM may blame the drug industry for overselling dis-
orders, but without the authority of the DSM the disorders couldn’t have
been diagnosed en masse in the first place.14 And the DSM’s authority
is inseparable from its seemingly precise criteria, its itemized specifica-
tions. The lawyerly nature of the diagnosis of depression in particular was
brought out by one of DSM-III’s framers who remarked, not altogether in
jest, that “the diagnosis of a depressive episode . . . is a sentence full of sub-
ordinate clauses and other grammatical intricacies.”15 In part just because
so many elements go into the making of a diagnosis, the text of the DSM
allows for more depression than its appearance as a checklist of require-
ments might suggest. The criteria of a depression diagnosis have changed
little over successive editions of the DSM; those in the most recent edition
appear in Table 1.1.
Built into the criteria for Major Depressive Disorder are low thresh-
olds, alternative entry conditions, and many symptoms common in a
healthy population, as well as a number of particulars that can easily
be forgotten, bent, or waived in practice, as is only fitting for a bible.
Requiring just two weeks of symptoms, the DSM criteria will catch the
common transient distress that would otherwise resolve spontaneously
within four weeks.16 In the template on which the DSM criteria are based,
and which had already been cited perhaps a thousand times in the medi-
cal literature—the Feighner criteria—the symptom period for depressed
mood is “at least one month.”17 (Note too that depressed mood itself isn’t
necessary for a DSM diagnosis of depression.) Though the Feighner cri-
teria for depression, for their part, are patterned on others published in
1957, they omit constipation because “it lacked specificity—many con-
stipated people are not depressed.”18 No more specific than constipation
are a number of symptoms included in both the Feighner and the DSM
criteria for depression, such as fatigue and faulty concentration. In a
study conducted by Spitzer and others in 1994, fully 58 percent of 1,000
primary-care patients reported fatigue on a questionnaire.19 As suggested
by frequent reminders in the medical literature that depression disguises
itself as common complaints, the diagnostic weight accorded such com-
plaints in the DSM has real implications. In addition to the two-week
DSM AND THE SHAPING OF DEPRESSION 5

Table 1.1 DSM-V Criteria for Major Depressive Disorder

A. Five (or more) of the following symptoms have been present during the same two-week
period and represent a change from previous functioning; at least one of the symptoms
is either (1) depressed mood or (2) loss of interest or pleasure.
Note: Do not include symptoms that are clearly attributable to another medical
condition.
1. Depressed mood most of the day, nearly every day, as indicated by either subjective
report (e.g., feels sad, empty, hopeless) or observation made by others (e.g., appears
tearful). (Note: In children and adolescents, can be irritable mood.)
2. Markedly diminished interest or pleasure in all, or almost all, activities most of the
day, nearly every day (as indicated by either subjective account or observation).
3. Significant weight loss when not dieting or weight gain (e.g., a change of more than
5 percent of body weight in a month), or decrease or increase in appetite nearly
every day. (Note: In children, consider failure to make expected weight gain.)
4. Insomnia or hypersomnia nearly every day.
5. Psychomotor agitation or retardation nearly every day (observable by others, not
merely subjective feelings of restlessness or being slowed down).
6. Fatigue or loss of energy nearly every day.
7. Feelings of worthlessness or excessive or inappropriate guilt (which may be
delusional) nearly every day (not merely self-reproach or guilt about being sick).
8. Diminished ability to think or concentrate, or indecisiveness, nearly every day
(either by subjective account or as observed by others).
9. Recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation
without a specific plan, or a suicide attempt or a specific plan for committing
suicide.
B. The symptoms cause clinically significant distress or impairment in social, occupational,
or other important areas of functioning.
C. The episode is not attributable to the physiological effects of a substance or to another
medical condition.
Note: Criteria A–C represent a major depressive episode.
Note: Responses to a significant loss (e.g., bereavement, financial ruin, losses from a
natural disaster, a serious medical illness or disability) may include the feelings of intense
sadness, rumination about the loss, insomnia, poor appetite, and weight loss noted in
Criterion A, which may resemble a depressive episode. Although such symptoms may be
understandable or considered appropriate to the loss, the presence of a major depressive
episode in addition to the normal response to a significant loss should also be carefully
considered. This decision inevitably requires the exercise of clinical judgment based
on the individual’s history and the cultural norms for the expression of distress in the
context of loss.
D. The occurrence of the major depressive episode is not better explained by schizoaffective
disorder, schizophrenia, schizophreniform disorder, delusional disorder, or other
specified and unspecified schizophrenia spectrum and other psychotic disorders.
E. There has never been a manic episode or a hypomanic episode.
Note: This exclusion does not apply if all of the manic-like or hypomanic-like episodes
are substance-induced or are attributable to the physiological effects of another medical
condition.
6 THE NOCEBO EFFECT

period, the alternative cardinal criteria, the inclusion of common symp-


toms, and numerous qualifiers and stipulations that may or may not be
observed in practice—all of which enable immense numbers of cases to
be diagnosed with an appearance of medical propriety—the DSM inter-
prets distress arising from life itself as evidence of a mental disorder. The
result is language that seems impressively specific but actually serves as
a catch-all for conditions ranging from ordinary discontents and mild
dysphoria to warranted sadness to implacable self-loathing and despair.20
In a sense, the story of depression is the story of DSM-III. The disor-
ders codified in DSM-III were supposed to become more definite and
distinct over the years, as reliable diagnostic criteria led to the selection
of homogeneous populations for research, which in turn would allow for
the discovery of identifiers such as the biological correlates of the disorder
and the constants of its clinical course. The opposite happened. Instead of
becoming more distinct, the disorders of the DSM have run together like
watercolors. “Patients do not usually have only mood, somatic, or anxiety
symptoms but tend to come with a mix from multiple symptom groups.”21
Even as DSM-IV was in the planning stages, studies repeatedly showed
patients meeting the criteria for three, four, or five different DSM diag-
noses.22 Tellingly large percentages of children diagnosed with ADHD,
a disorder whose definition mutates from one edition of the DSM to the
next, are found to have other disorders, inevitably including depression.
(Atomoxetine, better known as the ADHD drug Strattera, was originally
studied by Eli Lilly as an antidepressant.23 The stimulant methylphenidate,
commonly prescribed for ADHD, was once used as an antidepressant, and
antidepressants themselves are said to be an effective treatment of ADHD
in adults.)24 A study of adults with ADHD found that 87 percent had at
least one and 56 percent at least two other psychiatric disorders.25
Similarly, though a variety of specific disorders wouldn’t be expected to
respond to the same drug—in fact, the use of a single remedy for a plethora
of ailments traditionally signals the placebo effect—a potpourri of DSM
disorders, as well as miscellaneous complaints ranging from nonspecific
pain to “abnormal sensations,” are treated with selective serotonin reuptake
inhibitors (SSRIs), among the banner drugs of our era.26 (By analogy, aspi-
rin and other NSAIDs are widely used to treat all manner of complaints,
including nerves, sleep problems, low mood, and “things in general.”)27
While DSM-III wasn’t ghostwritten by the pharmaceutical industry, its
officially distinct yet actually blurry categories turned out to be perfectly
adapted to the aim of selling drugs to the widest possible market. Drugs
have been marketed for premenstrual dysphoric disorder even though its
official symptoms are so generic they can be satisfied by depressed men.
If  diagnostic categories were really as objectively distinct as DSM tax-
onomy makes them appear—though the framers of DSM-III hoped they
DSM AND THE SHAPING OF DEPRESSION 7

would prove distinct rather than knowing them to be so28—they wouldn’t


have presented such good targets for highly promoted drugs that some-
times resemble placebos with side effects.
Because apparently strict DSM criteria lend themselves to inflation,
they have enabled the mass marketing of drugs for ambiguous ills like
depression even though the full potential of marketing wasn’t realized
until the advent of direct-to-consumer (DTC) advertising in 1997.29
Indeed, unless the DSM had established the diagnosis of Major Depres-
sion and trained our habits of classification, common side effects of anti-
depressants, including drowsiness, loss of sexual interest, and “emotional
disengagement,”30 could well have been described as depressing. (The
adverse effects of the drugs themselves may have something to do with
the negative results of the many antidepressant trials buried in company
archives.)31 The symptom-based taxonomy of the DSM also gave drug
companies lists to use both in advertising and awareness campaigns
allegedly in the public interest. Twenty years before a Paxil ad showed
an anxious woman surrounded by the words FATIGUE, IRRITABIL-
ITY, SLEEP PROBLEMS, RESTLESSNESS, ANXIETY, MUSCLE TEN-
SION, and WORRY,32 DSM-III included each of these symptoms except
the second among the diagnostic criteria of Generalized Anxiety Disor-
der (which required six months of symptoms as opposed to a mere two
weeks for Major Depression, despite the kinship of the two disorders and
the overlap of their symptoms). Maybe the DSM feeds into advertising
because the process of shaping ills into codified disorders is something
like a branding operation in the first place.
The DSM category of depression bundles a number of ills, labels them
as one, and gives the entire package instant recognition in the marketplace
of ideas and the marketplace per se, and in an era of disease-mongering,
as many call it, such techniques have high importance. Not only does an
officially specific disorder distinguish itself from generic ills as a branded
product sets itself apart from ordinary goods,33 but the name of the disorder
establishes its identity like that of a product. The president of the National
Pharmaceutical Council once said that a brand name is simpler and easier
to remember and pronounce than a generic one.34 By the facility standard,
“ADHD” is a marketing triumph; and if the most potent brand names
are recognized around the globe, the DSM, which underwrites disorders
like ADHD, has its own international currency. The branding of products
goes along with the expansion of wants and needs that defines a consumer
economy, while the popularization of disorders indexes the demand for
psychological services—a demand that took off when traditional norms of
self-restraint came under general attack in the years leading up to DSM-
III.35 The dizzying increase in diagnosed disorders in the DSM era makes
no sense unless we bear in mind the DSM’s power to brand categories and
8 THE NOCEBO EFFECT

produce belief. In the coming pages I trace in particular some implications


of the suggestiveness that surrounds a “specific” disorder much as an asso-
ciative field surrounds a distinctive, well-established brand.
Now that 10 percent of all Americans over age 6, and 25 percent of
American women aged 40–59, take antidepressants like Paxil,36 one looks
back in disbelief to the drive to return psychiatry to clear thinking about
the difference between normality and mental disorder that inspired DSM-
III. If DSM-III drew the line between normality and illness, it’s hard to
see why Spitzer’s successor should have concluded in 1987, only seven
years after DSM-III and just as Prozac was coming to market, that diag-
nosis was veering out of control—“there were too many categories and
too many people being diagnosed.”37 No more than a thin, faint boundary
separates the reforming zeal that brought DSM-III into being from the
zealous or overzealous application of its categories to the world at large.
Even while DSM-III was under construction, efforts were made to apply
its categories to the general population.38 (Indeed, the diagnostic criteria
of DSM-III were specifically designed for use by lay interviewers conduct-
ing population surveys.)39 The diagnostic front line is now primary care,
where the population presents itself to medicine. Again and again in the
medical literature primary-care doctors are reminded that they fail to
detect something like half the depression they confront,40 while the fact is
that depression is now more likely to be overdiagnosed in primary care41
and that missed cases are least likely to benefit from treatment.42 Like the
addition of new diagnoses by the dozen in DSM-III and its successors, the
campaign to make primary-care doctors into officers of the DSM system
has contributed to the interpretation of ordinary or “subclinical” condi-
tions as medical issues.

Expanded Eligibility

Because the reformers associated with Spitzer identified themselves as neo-


Kraepelinian after the pioneer of psychiatric classification, Emil Kraepelin
(1856–1926), we might briefly note both family resemblances and differ-
ences between his portrayal of the depressive phase of manic-depressive ill-
ness and DSM criteria for Major Depressive Disorder that lend themselves
to systematic activism and diagnostic inflation. A generation before the
neo-Kraepelinians coalesced into a group, American psychiatrists might
have read descriptions like this in the master’s textbook:

In the depressive states of the disease the emotional attitude is regularly that
of gloominess, despair, doubt, and anxiety. Patients complain particularly
of the loss of interest in things; “everything is the same to them,” “they are
DSM AND THE SHAPING OF DEPRESSION 9

desolate and empty,” “they are dead, because they have no feeling,” “music
does not sound natural,” and “the crying of the children no longer creates
sympathy.” They feel as if they no longer belong to this world . . . The psy-
chomotor field in the depressive form presents a retardation of activity . . .
In the mildest degree this retardation appears as a deficiency in the power of
resolution. Actions may not only be performed slowly, but even after being
started may fail of completion. The simplest movements, such as walking
and talking, are performed very slowly and without energy . . . Some patients
are so taciturn and monosyllabic that it is impossible to engage them in con-
versation, and although they are able to count or read aloud as rapidly as
ever, they will sit for hours with a letter in front of them, unable to finish
writing it.43

“Loss of interest in things” becomes the DSM’s “markedly diminished


interest or pleasure”; the feeling of desolation and hopelessness becomes
“depressed mood”; “retardation of activity” becomes “psychomotor
retardation”; deficiency of resolution becomes “indecisiveness.” Yet the
extreme condition sketched by Kraepelin, one in which “‘music does
not sound natural’” and patients feel as if they “no longer belong to this
world,” can’t be imagined as so common that at any time perhaps 10 per-
cent of the population qualifies. Kraepelin portrays someone more like
Melville’s Bartleby (taciturn and monosyllabic to perfection) than an
ordinary citizen.44 Unlike Kraepelin’s nosology, the operational criteria
of the DSM serve as instruments of diagnostic activism. Max Hamilton,
the author of a Depression Rating Scale used in trials of antidepressants
as well as in clinical practice, once said of the use of checklists, “It may
be that we are witnessing a change as revolutionary as was the introduc-
tion of standardization and mass production in manufacture.”45 The DSM
might be regarded as an elaborate checklist enabling the mass production
of diagnoses.
At the center of the movement to formulate diagnostic criteria for
mental disorders was the Department of Psychiatry of Washington Uni-
versity, in which a leading figure was Eli Robins, who studied under the
brilliant maverick Mandel Cohen. In 1957, well before the popularization
of depression, Cohen and coauthors published in JAMA an observational
study of depressive symptoms that uses the two-tiered criterion system
later employed in the DSM; that is, patients qualified for the study if they
(a) showed depressed mood, and (b) had six of ten symptoms ranging from
constipation and insomnia to suicidal thoughts.46 (Why six? Years later,
the study’s first author said, “It sounded about right.”47) Essentially the
same method used in the 1957 paper to delineate depressed patients from
healthy controls in the sharpest way has generated depression diagnoses by
the million under the reign of the DSM. How can this be?
10 THE NOCEBO EFFECT

To begin with, consider the string of options in the crucial first criterion
of depression in DSM-III:

Dysphoric mood or loss of interest or pleasure in all or almost all usual activ-
ities and pastimes.

The word “or” occurs three times, with the effect of expanding eligibility.
No longer is depressed mood necessary for depression, and for that matter
you can lose either interest or pleasure, and you don’t have to lose one or
the other in all things, but just most. (Recall too that the DSM halves the
symptom period required by the Feighner criteria.) By providing alterna-
tive entry criteria for depression—depressed mood or loss of interest or
loss of pleasure—DSM allows three options instead of one, the result being
a test so loose that as many as half of screened patients will score posi-
tive.48 The entry criteria therefore need to be supplemented. At this point
another change comes into play: The number of secondary symptoms
needed for DSM depression is lowered from six to four. It should be noted
that symptoms in this category, such as poor concentration, insomnia,
and fatigue—and insomnia virtually implies fatigue—are common in the
general population and therefore of questionable diagnostic significance.
(Thus, in a survey of healthy students conducted a dozen years before
the diagnosis of Major Depression was codified in DSM-III, 27 percent
reported “inability to concentrate.”)49 Such generic complaints are now the
most frequent presenting symptoms of depression, or, rather, presumed
depression. Yet while common problems are interpreted as symptoms of
depression, the same problems are discounted when produced by the drugs
called antidepressants.50 (Thus, sleep disturbances and fatigue, both DSM
symptoms of depression, are listed by Eli Lilly as common side effects of
Prozac.)51 It’s as if secondary symptoms lose their significance in the eyes
of medicine once they do their job of boosting the diagnosis of depression,
even though interpreting “unexplained” symptoms as evidence of a mental
disorder conflicts with the principle of avoiding speculation that inspired
the diagnostic revolution in psychiatry. Just as the neo-Kraepelinian DSM
enables millions to have the depressive disorder portrayed by Kraepelin
as far from ordinary, the DSM movement adapts to the entire population
diagnostic criteria that were met by “probably the sickest of the whole
group” of 248 psychiatric patients in the Cohen study.
Beginning by identifying manic-depressive disease as “a serious cause
of disability and even death,” the Cohen study later notes that many with
this disease are “merely patients who are tired and have insomnia, head-
ache, and nervousness.”52 Spanning a range of conditions,53 its causal
mechanism unknown but the subject of learned speculation, established
DSM AND THE SHAPING OF DEPRESSION 11

by shifting criteria and thresholds, depression defies its own label as a spe-
cific disorder. A convincing argument holds that patients who would have
identified themselves as anxious a few decades ago, when anxiety ruled
the day, now call themselves depressed because depression happens to be
in the ascendant for marketing reasons.54 (If this is so, then the intimate
experience of being unwell is much more open to social influences than we
may suppose.) In the Cohen study subjects were given over a dozen terms
for “depressed,” including not just “worried” and “despondent” but “angry”
and “disgusted,” and counted as depressed if they checked any of them. The
only thing all seem to have in common is that they lie off the beaten path
of normative cheerfulness. So diagnostically equivocal is the entity reified
as depression that nothing jumps out at us in the statement, “Symptoms
like anxiety, depression, fatigue, and sleep disturbances seem to be found
in many kinds of patient, whatever their physical or psychiatric status.”55
Nothing jumps out even though depression is listed as a symptom and not
a specific disorder with symptoms of its own, including all the other symp-
toms on the same list.56
For many patients with a collection of generic symptoms, depression
acts as a diagnostic net to gather all together. While DSM-III overthrew
the concept of neurosis dear to the Freudians in the name of scientific diag-
nosis, the fact is that the most common symptoms of neurosis in Freud’s
time—insomnia, fatigue, dyspepsia, and the like57—became the most com-
mon symptoms of depression in the age of the DSM. As this may suggest,
the makers and inheritors of the DSM revolution reserved the right to
interpret physical symptoms as indices of a mental disorder even after the
destruction of the Freudian temple.58 Neurosis as conceived by Freud was
a kind of illness continuous with normality, and the same is true of all but
severe depression; but the DSM enabled the production of diagnoses on a
scale beyond the reach of the Freudians, one as large as the marketplace.
This dramatic expansion of diagnosis couldn’t have taken place unless the
protean neurosis (protean because a symptom can signify anything) had
yielded to the codified disorder.
In an intriguing study of the influence of placebos on insomnia con-
ducted a decade before DSM-III, subjects treated with pills with a sup-
posedly arousing effect fell asleep more readily than subjects told the pills
were sedating, evidently because being able to attribute their own aroused
state to a pill eased their mind. Many people, it seems, are “troubled by
their insomnia, taking it as evidence of a major physical or psychological
disorder,” an inference that sets up “a vicious cycle in which symptoms of
insomnia elicit worrisome thoughts that further aggravate the insomnia.”59
The interpretive system installed by DSM-III invites the doctor to construe
insomnia as, in fact, evidence of disorders including Major Depression,
12 THE NOCEBO EFFECT

though within a few years of DSM-III a new generation of drugs—the


SSRIs—arrived on the scene to ease the patient’s mind. As it happens, the
effect of these compounds, too, is largely placebo.

Skewed Calculations

A half century ago it was recognized that many of the ills that send patients
to the doctor “cannot be labeled as ‘diseases.’ They are patients’ problems,
concerns, complaints, symptoms, and assorted ‘conditions,’ including a
wide variety of social and psychological problems that are the day-to-day
fare of general physicians.”60 Over the intervening decades, many of these
ills have been promoted to the category of disorders and given labels that
have been taken up by patients themselves.
Not just the DSM but what has come to be known as medicalization—
the framing of normal conditions as medical issues—now reaches into all
corners of private and public life, and those who execute its mandate can be
confident that their hunt for ills to treat will be successful, simply because
what they’re searching for is everywhere. If you’re looking for symptoms of
postconcussive syndrome, for example, you’ll find them even in a popula-
tion of healthy college students who have never suffered a head injury.61
In the pages to come I document the crusade against normality, arguing
that human life abounds with raw material for medicalization to mold
into disorders, and that the shaping process produces harm in violation
of medicine’s first principle. Much as the DSM system has defeated its own
goal of curtailing bad diagnostic practices, medicalization in general has
disordered the calculation of risks and benefits. To begin with, the ben-
efits of drugs decline as they are prescribed to populations less unwell than
those on whom they are first tested, which is exactly the pattern seen in
practice over recent years. “New medical interventions tend to be studied
in severely ill patients where significant benefits can be expected. After a
therapy is established, physicians tend to broaden its use and prescribe it
to a wide range of patients, including a high number of less sick patients.”62
Medicalization targets the vast market of the less sick, straining the ratio
of risks and benefits precisely by treating those who don’t stand to enjoy
“significant benefits.”
However, medicine has extended its writ not only over the less sick but
many not sick at all, such as patients suffering from normal distress. Con-
sider the case of a woman whose diagnosis of depression appears not to be
based on DSM-IV, which was in effect at the time.

Ms. A is a 32-year-old mental health services worker who consulted with


her family physician following the sudden death of her mother 2 weeks
DSM AND THE SHAPING OF DEPRESSION 13

earlier. She had hoped that her physician would either offer her time in the
consultation to process her sense of shock and validate her feelings or refer
her to a therapist attached to the practice. Instead, her physician suggested
that she should start a course of antidepressants. She accepted the antide-
pressant prescription without expressing her preference for psychological
therapy, but left the consulting room having already decided that she would
not redeem the prescription. She did not understand how antidepressants
could help her to come to terms with her unexpected bereavement. From her
observation of clients on long-term treatment for severe depression, she per-
ceived that one of the adverse effects of antidepressants was reduced energy
and motivation to deal with problems.63

One has the impression that the doctor in this instance didn’t weigh pros
and cons but came to an automatic conclusion, leaving the drawbacks of
antidepressants to the patient. Yet the patient wasn’t depressed but “in
shock,” and for a good reason. Maybe the doctor thought the dulling effect
of an antidepressant would be a balm for someone in shock, but that isn’t
what the patient was looking for; in fact, if she had presented with “reduced
energy and motivation to deal with problems” she might well have been
diagnosed as depressed. The study from which I’ve taken this case (actually
a composite) never questions the diagnostic fashions that lead to the over-
prescription of antidepressants, though it does comment that giving anti-
depressants to the mildly depressed results in a poor risk/benefit ratio.64
Inasmuch as SSRIs are negligibly superior to placebo in treating depression
in most cases, determining the ratio of risks to benefits for an overdiag-
nosed disorder like depression comes to resemble dividing by zero. As if
the benefits of SSRIs and similar drugs did in fact compute to nothing, a
comparison of large surveys conducted in Britain in 1993 and 2000 showed
that “widespread increased prescribing of psychotropic medication”—led
by SSRIs—“has not improved the mental health of the nation.”65
In addition to treating milder forms of disease and even conditions
indistinguishable from normality, medicalization seeks out disease in its
incipient stages, before it has had time to manifest itself. As a result of the
early-detection imperative, “common problems will be identified in many
individuals who would not be harmed by the disease and, therefore, would
not benefit from treatment.”66
One such problem is prostate cancer. Early in the era of prostate-cancer
screening, proponents “dismissed concerns about harms”67 and argued
that there was no time to wait for evidence of benefits to emerge from
clinical trials, as if the principle of weighing harms and benefits simply
didn’t apply to the practice of screening millions for a highly ambiguous
cancer.68 Around the same time, proponents of mass screening for coro-
nary risk factors made the assumption that such a program could benefit
14 THE NOCEBO EFFECT

but could not harm.69 The drive to screen for depression shows the same
one-sidedness; thus, the US Preventive Services Task Force found no data
on the harms of screening adults despite the patent risk of labeling nor-
mal distress as a mental disorder,70 among the many pitfalls and shortfalls
of depression screening. (I will propose an analogy between the crusade
against prostate cancer and that against the “psychological cancer,” depres-
sion.) Clearly, unless the costs of medicalization were somehow effaced,
it would be difficult to get people to buy into the broadening of medical
definitions and boundaries. Yet those costs may also escape the notice of
those who impose them. “Downstream harms from overtesting and over-
treatment may be completely invisible to clinicians,” because of their belief
in their own beneficence, the delayed onset of the harms, or both.71
A measure of the inattention to harm in a climate of medicalization is
the scant information about adverse effects of drugs in published papers.
In 2001, four years after DTC advertising revolutionized the marketing of
drugs, an analysis of safety-reporting in a broad array of drug trials assessed
the provided information as “largely inadequate,” with approximately the
same amount of print space devoted to the authors’ names and affiliations
as to the adverse effects of the drugs under study.72 Trials of drugs used to
treat mental illness follow the same pattern. “Even with lenient criteria,
very few .  .  . have adequate reporting of clinical adverse events.”73 How
to balance risks and benefits without good information about the risks?
So it is that doctors routinely strain risk/benefit calculation by prescrib-
ing highly promoted drugs whose utility profile remains unknown in the
absence of good information (and prescribing them in decreasingly severe
cases). “Only when more adequate types and numbers of patients are stud-
ied for sufficiently long periods can a more accurate profile of their risks
and benefits emerge.”74 Given, too, that the prescription of psychoactive
drugs is “always a fine balancing act”75 owing to individual differences, the
sometimes paradoxical character of drug effects, and our ignorance of the
actual (in contrast to presumed) causes of mental disorders, the mass pre-
scription of these drugs in and of itself violates the balancing of risks and
benefits. A searching critique of the use of psychoactive drugs as putatively
specific agents concludes that belief in them “has led to their indiscriminate
prescription to millions of people often for decades on end. It is likely that
many people exposed to the harmful physical and psychological effects of
these drugs derive no benefit from them.”76 However, if their prescription
really is indiscriminate—as the evidence suggests—then it’s not just likely
but very likely that for most, not just many, of those who take psychoactive
drugs there are no benefits to set against harms.
In that the overprescription of psychoactive drugs has taken place
under the auspices of the DSM, the ascendancy of the DSM system has
DSM AND THE SHAPING OF DEPRESSION 15

distorted the calculation of risks and benefits. Consider the case of the
DSM-authorized disorder ADHD (originally ADD). In that the safety and
efficacy of the medications used to treat ADHD are established in brief
clinical trials while the drugs are actually used for years on end, the mass
prescription of stimulants represents an experiment in itself. Of course, it
could be said of many other drugs that their long-term use is underwrit-
ten by short-term trials. In this instance, though, the drugs are adminis-
tered to children as young as two, unlikely to be represented in any trial
population.77 An investigator of the prescription of psychoactive drugs
to preschoolers reports that while 55 percent more of these children were
diagnosed with behavioral disorders in 2009 than in 1994, only 29 percent
of those diagnosed were given drugs (as against 43 percent in 1994). “We
were very pleased to see that the rate of psychotropic drug use in this age
group isn’t going steadily up each year,” said the investigator. “But we are
still giving these drugs to young children, so we need more research into if
and how they influence the developing brain.”78 Virtually by definition, it
defies medical prudence to prescribe psychoactive drugs to two-year-olds
even while their effect on the brain remains unknown.79 Medical prudence
involves not just totaling pros and cons in some fashion but weighing risks
and benefits in the light of the particular duty to avoid harm incumbent on
a doctor as a doctor.80
And in the case of ADHD, the balance of the evidence is particu-
larly disturbing. Though the DSM-II precursor of ADHD (Hyperkinetic
Reaction of Childhood) was thought to subside by adolescence,81 and
though nearly 90 percent of ADHD cases appear to be mild to moderate,
long-term outcomes of ADHD are dismal, with diagnosees at markedly
higher risk of dropping out of school, early pregnancy, drug abuse, auto
accidents, being fired, incarceration, even death.82 (In a study that fol-
lowed an ADHD population for 33 years, diagnosees died at a rate 2.5
times higher than controls. Subjects exhibiting aggression or antisocial
behavior were excluded from the study.)83 If a drug showed results like
these it would be pulled from the market; if a trial yielded such results, it
would be stopped. How do outcomes so alarming follow from a disorder
whose symptoms can be as trivial as fidgeting84 and whose cases fall over-
whelmingly into the mild-to-moderate range?85 Either a disorder ques-
tionably distinct from normality86 is inherently fraught with great risk or
it becomes so as a result of a process set in motion by diagnosis itself. The
latter possibility—that diagnosing ADHD can harm, if only by cuing the
behavior of the child and the expectations of others87—doesn’t seem to
enter into the judgments that support the diagnosis. As a result of what
has been called “diagnosis threat,” people whose attention is called to
cognitive deficits supposedly associated with mild head injury perform
16 THE NOCEBO EFFECT

worse on various tests than people with the same history not cued to do
poorly.88 The ADHD label has all the automatic associations and evoca-
tive power of a stereotype, with the authority of medicine to boot, and it
would be strange if such a potent influence had, in fact, no influence on
the labeled child.89 Children are not notably invulnerable to the power
of suggestive messages. A diagnosis that tells children there’s something
radically wrong with their wiring, such that they need a drug to regulate
themselves, can leave them “less well-equipped to draw upon their own
resources to solve their problems.”90 That the neurological cause of the
child’s theorized defect of self-regulation is also theoretical doesn’t keep
the notion of such a cause from being powerful. People caught up in mass
psychogenic outbreaks experience illnesses whose causes, such as a toxic
gas, they are fully convinced of even if they can’t be found.
In laying out the hazards of the DSM system, and DSM-V in particu-
lar, the architect of DSM-IV (which broadened the criteria for ADHD)
reminds both primary-care doctors and psychiatrists to “conduct a risk-
benefit analysis” before making a diagnosis. “In toss-up situations, weigh
the pluses and minuses of giving the diagnosis,” writes Allen Frances. “The
basic question boils down to, ‘Is this diagnosis more likely to help or more
likely to hurt?’”91 Only if clinicians under the influence of the DSM sys-
tem had somehow forgotten such elementary principles would they need
to be reminded of them. Frances concludes that the best that can be said of
DSM-IV is that it didn’t make the DSM system even worse than it already
was.92
Writing in 2009, the chair of the DSM-V Task Force held out the hope
that “Mental disorder syndromes will eventually be redefined to reflect
more useful diagnostic categories (‘to carve nature at its joints’) as well
as . . . clear thresholds between pathology and normality.”93 It’s a sobering
thought that after 30 years of DSM hegemony and the writing of billions
of prescriptions, the boundary between normality and disease remains so
nebulous to psychiatry that its clarification is postponed into the indefinite
future, as something that will “eventually” come about. If medicalization
means the definition and treatment of normal conditions as medical prob-
lems, this statement of hope amounts to a confession that the DSM has
contributed in a large way to exactly that. But in addition to the overpre-
scription of drugs with questionable harm/benefit profiles, medicalization
poses a subtler risk: the risk that the suggestiveness of the diagnoses given
to common problems will color people’s understanding of themselves and
even mold their experience.
Suppose a team of psychologists wants to test the theory that people
receiving a high blood-pressure reading will notice more of the symptoms
they associate with high blood pressure. Doing what experimenters do,
DSM AND THE SHAPING OF DEPRESSION 17

the team devises a study where half the subjects are deliberately given false
high readings and then asked to report the occurrence of symptoms like a
fast heartbeat, headache, and shakiness. Such a study was in fact conducted
(using college students as the guinea pigs), and it confirmed the theory in
question, but for our purposes the point is that the experimenters made
sure the hoax didn’t last long and the subjects were fully debriefed after-
ward.94 The experimenters seem to have been keenly aware of the risks
of feeding false medical information even to a population proverbially
invulnerable to anxiety over health. They point out that they didn’t lead
the subjects to believe they had hypertension and didn’t allow them to
“carry . . . false information with them for several hours or days,” as “such
a procedure would be unethical.”95 If they had given the false information
time to really sink in, it could have changed the subjects’ understanding of
themselves; it could also have abetted the stress that the subjects attributed
their supposedly elevated blood pressure to in the first place.
My point, of course, is that being diagnosed with a mental disorder
when you’re normal is like receiving false information about your blood
pressure, except that in this case the false information comes as a result of
“diagnostic exuberance,”96 it isn’t retracted, it has all the time it needs to
sink in, it necessarily changes your self-understanding, and for all these
reasons it’s more insidious.

Noxious Diagnoses

Given DSM depression criteria, “with repeated screening, a large propor-


tion of the population will be falsely considered to be depressively disor-
dered at one time or another and possibly treated for a disorder that they
do not in fact have.”97 And yet the harms of transforming common, often
amorphous symptoms into a defined disorder go beyond treating people
needlessly with powerful drugs. While an influential argument holds that
it doesn’t matter if the ideas instilled in a patient in psychotherapy are false
provided they are sufficiently therapeutic,98 the practice of persuading
patients they’re sick when in fact they aren’t—which is what overdiagnosis
comes to—seems impossible to defend on any philosophical ground. That
the patients may have some symptoms that lend themselves ambiguously
to the diagnosis simply makes things worse, by giving the diagnosis facial
plausibility. Even if nothing but a distorted self-understanding resulted
from getting normal people to believe themselves sick, that alone would
be deplorable.
But other consequences do flow from overdiagnosis. In cases known to
medicine, patients feel genuinely sick when they are expected to feel sick;
18 THE NOCEBO EFFECT

so it is, for example, that Americans report chronic neck pain after minor
car accidents not because the collisions necessarily cause such pain—in
other societies comparable collisions may cause none—but because we
generally expect it. (The authenticity of the experience bears note: While
some may fake their pain, malingerers are the exception, not the rule.)99
But if our very experience is subject to the power of expectations, those
packed into a suggestive label like “depression” could change the experi-
ence of patients who receive an inflated diagnosis—all the more because
the diagnosis has both medical legitimacy and social currency. Many of
those mislabeled with medical, including psychiatric, disorders can and
will discover corresponding symptoms. According to Spitzer, it’s not just
possible but common for members of the general population to have
symptoms of certain popular disorders without having the disorder.100 In
cases like these an inflated diagnosis could have the perverse effect of rein-
forcing the symptoms.
The speed with which new DSM diagnoses acquire constituencies and
pass into common speech points all too clearly to the document’s power
to produce belief. In addition, “a large proportion of the population” given
an identical diagnosis may generate or be swept up in a trend whose social
power alone makes the diagnosis credible. Tagged with a diagnosis persua-
sive in all these ways and more, patients falsely found or presumed to be
depressed may conclude that something is wrong with their brain, or that
their ability to weather distress is lacking, or that their state is destined to
recur or even worsen unless treated, all of which are depressing thoughts.
(“Don’t worry, it’s clinical depression,” a GP told one of his patients.)101
Diagnostic labels, even false ones, have power. They not only excite belief
but shape understanding and guide the search for confirming signs.102 So
it is that normal people diagnosed as depressed because they are going
through the adversity incident to human life “might . . . be more likely to
see themselves not as normally stressed but as ill . . . and in general play
out the role of a limited person assigned to them by a medical authority.”103
Particularly where the pursuit of happiness is confused with a kind of right
to happiness, those who find themselves unhappy may well assume it’s the
fault of a biochemical problem.
There are patients who suffer from symptoms that can’t be pinned down
to any specific cause but which they ascribe to a disorder that’s a hot topic
at the moment (say chronic fatigue). Like the attribution of insomnia to
an underlying mental disorder, such an ascription can heighten symp-
toms by giving them a potent, suggestive explanation. In cases of this kind
medical commentators speak of normal symptoms mutating into some-
thing unusually distressing as a result of a process of interpretation gone
awry. Yet because of the inherent ambiguity of internal signals, anyone and
DSM AND THE SHAPING OF DEPRESSION 19

everyone—not just patients caught up in a puzzling syndrome—can mis-


interpret their own state.
In many, if not most cases, we have available to us a large number of inter-
nal sensations that are vague, diffuse, and subjective. Given their ambiguous
nature, their perception and interpretation will be greatly influenced by the
hypotheses we adopt. Further, the hypotheses that we adopt will have a high
probability of being confirmed.104

Upon hearing reports of cases of food poisoning emanating from a restau-


rant I visit, I begin to notice the telltale symptoms. But third parties, too,
can find what they are looking for because they are looking for it. Doc-
tors who construe “vague, diffuse, and subjective” symptoms as surrogates
for depression, because the literature warns time and again that too much
depression goes undetected, also have a theory driving their search for
markers and signals, and given the universality of symptoms with no par-
ticular medical explanation, that theory, too, will have a lot to work with.
For patients, “symptoms are intensified when they are attributed to a
serious disease rather than more benign causes such as lack of sleep, lack
of exercise, or overwork.”105 If patients can make too much of their symp-
toms, so can doctors mistakenly magnify lack of sleep itself into a symptom
of the serious disorder, depression. While the medical literature explicates
the process by which patients get trapped in a pattern of misinterpretations,
rarely is it mentioned that doctors too risk error by interpreting generic ills as
evidence of depression—and that every such diagnosis adds to the argument
that depression is an unperceived epidemic, precisely because it camouflages
itself and thereby escapes detection. If patients seem to acquire controversial
syndromes as though they were spread by information,106 so too the topical-
ity of depression fuels the practice of diagnosing depression; and whereas
a functional or medically inexplicable syndrome is more like a basket of
ills than a specific entity, depression includes not only a number of generic
symptoms but a spectrum of shades and intensities including what’s rightly
called normal sadness. Contrary to the claim that doctors allow too much
depression to go undiagnosed and untreated, the evidence suggests that
unrecognized cases fare better107 and that for every seven patients treated
with SSRIs in primary care as few as one may benefit.108 This is not, of course,
what the consumer is led to suppose, and points to a level of benefit so mod-
est that it could easily be outweighed by harms associated with side effects or
the labeling of the patient’s condition.109 After all, undiagnosed depression
may remit simply by following its own course, but the same patient diag-
nosed with depression learns to think or him- or herself as depressed.110
Consider an analogy with another diagnosis that took wing once
instated in DSM-III: post-traumatic stress disorder (PTSD). (By 1999,
20 THE NOCEBO EFFECT

there were some sixteen thousand articles on PTSD in the medical litera-
ture,111 and the term had long since entered popular lore.) A number of
official symptoms of PTSD, including disturbed sleep, faulty concentra-
tion, diminished interest, and guilt, are in fact also official symptoms of
depression; other symptoms overlap other disorders, and even core symp-
toms appear in healthy populations.112 In a word, the components of PTSD
appear to be nonspecific. By organizing such symptoms of distress into
a highly connotative disorder and playing down the natural capacity for
recovery, it’s possible to aggravate the symptoms themselves. As noted in
a duly critical account of the rise of the PTSD diagnosis, several studies
have shown that patients who underwent intensive treatment for PTSD
deteriorated as a result.

Long-term treatment in hospitals, as well as the kinds of cathartic emotion-


ally evocative treatments offered in the VA, make trauma victims hypersen-
sitive rather than less aware of their symptoms. By provoking the patients
to concentrate too much on their psychological wounds from combat, the
therapists distracted them (and everyone else) from individual “here-and-
now” causal issues, to the detriment of recovery and rehabilitation.113

If PTSD isn’t really specific to begin with—and DSM-IV opened eligibility to


people who neither suffered nor actually witnessed a traumatic event—then
perhaps this isn’t a special case. Elevating common symptoms to the status
of an official disorder, and designing the disorder in a way that appeals to
the mood of the times even as it claims medical legitimacy, can lead to per-
verse outcomes. In many cases other than PTSD, symptoms are reinforced
in the process of acquiring clinical definitions. The mass marketing of diag-
noses is a risky business, all the more if the risks aren’t even recognized.114

Cued Expectations

All of us are probably more suggestible than we suppose. Even what we


think of as the elementary experience of pain is subject to suggestion. Not
only do people in one study after another report pain when cued to expect
it, even if none has been administered, but they, or we, can be led to report
contrary reactions to the same stimulus—both pain and pain relief, even
both pain and pleasure. Recently, to test the value of knee surgery, sub-
jects who had the surgery were compared to others who were treated to an
elaborate charade worthy of the Arabian Nights.

To mimic the sensations and sounds of a true arthroscopic partial menis-


cectomy, the surgeon asked for all instruments, manipulated the knee as
DSM AND THE SHAPING OF DEPRESSION 21

if an arthroscopic partial meniscectomy was being performed, pushed a


mechanized shaver (without the blade) firmly against the patella (outside
the knee), and used suction. The patient was also kept in the operating room
for the amount of time required to perform an actual arthroscopic partial
meniscectomy.115

Those who had the sham procedure fared as well as their counterparts.
It would be a mistake, though, to suppose the effects of suggestion are
confined to the operating theater or the laboratory. A review of studies
of negative suggestion concludes fittingly that both “health warnings in
western societies” and diagnoses themselves can engender effects simi-
lar to laboratory manipulations.116 We have every reason to believe that
a diagnosis at once popular and highly suggestive, like depression or
ADHD, can have an effect of its own whether or not its evidentiary basis
is solid. While the sights and sounds of the operating room make for a
uniquely convincing kind of drama, a child diagnosed with ADHD and
medicated accordingly is immersed in social theater indistinguishable
from life itself.
If the DSM diagnostic system is influential enough to be recognized
by courts, governments, and institutions of medicine, it can also color a
patient’s self-understanding. Over the years the DSM system has been in
place, it has become common for patients entering psychotherapy to bring
a diagnostic label with them (“I have bipolar”), suggesting it has seeped
into their way of thinking just as it entered common speech in the first
place.117 And with the population at large now considered as psychiatry’s
constituency, the influence of diagnostic labels extends far beyond those
patients interested in a psychological alternative or complement to phar-
macotherapy. The founder of the DSM system concludes that it “serves to
define .  .  . how individuals themselves interpret their emotional experi-
ences,”118 which leads inescapably to the conclusion that someone who
receives an inflated DSM diagnosis can come to believe it.119 In an inter-
view a few months before his death, Mandel Cohen observed that once the
diagnosis of ADHD was codified in the DSM, it acquired an illusory reality
and attracted an inordinate number of cases. “Once you get the initials, the
condition solidifies”120—a comment that points to the power of disorders,
especially those with catchy labels, to captivate both the professional and
public imagination. ADD (Attention-Deficit Disorder) made its appear-
ance in DSM-III and solidified even though the 1987 revision of DSM-III
conceded that ADD without hyperactivity was a construct so question-
able that “research is necessary to determine if this is a valid diagnostic
category and, if so, how it should be defined.”121 Thus, from 1980 to 1987
it was possible to be diagnosed with a disorder whose validity—that is,
22 THE NOCEBO EFFECT

existence—was then put in question by the DSM itself. Are we to believe


that those diagnosed with this dubious malady had any notion that it was
dubious?
In the doctor’s office the public imagination and that of medicine meet,
and it’s here, therefore, that the credit DSM categories possess in the eyes of
medicine carries over to patients. Patients proverbially pick up on doctors’
messages, so that, for example, doctors who project belief in their diag-
noses and methods make for believing patients. Thus, according to one
analysis, among the factors that go into a strong doctor-patient relation-
ship is “the physician’s faith in his own therapy.”122 (The study protocol of
double-blinding—that is, the concealment of treatments not only from the
subject but the doctor—serves in principle to prevent the cuing inseparable
from clinical medicine.) When surgeons ask postoperative patients, “How
is your pain?” rather than “How are you feeling?” many more patients
report pain, as if the doctor’s words had the effect of prompting their symp-
toms.123 So great is a doctor’s influence that a treatment that is in fact a
placebo can act as a therapy if it serves for the patient as a symbol of his or
her bond with the doctor.124 But if doctors influence patients to this degree,
transmitting confidence, eliciting pain, even activating inert substances,
by the same token doctors who apply diagnoses to normal patients in an
excess of therapeutic zeal can unwittingly persuade them they are unwell.
By this means among others, the framing of normal conditions as medical
problems can trigger the nocebo effect, the underrecognized twin of the
placebo effect that permeates medicine.125
In a classic of the placebo literature (hereafter the K. B. Thomas study),
a GP randomly divides patients with common complaints into two groups,
the first of which is reassured that they will be “better in a few days,” the
second told that he doesn’t know what’s wrong with them.126 The first
group recovers more quickly whether or not treated with a placebo pill,
a result universally interpreted as demonstrating the value of reassurance.
But if patients with common complaints can be helped by being told that
nothing is really wrong with them, maybe they can be harmed by being
told that something is wrong with them—that is, by receiving an inflated
diagnosis.127 Perhaps because of the medical literature’s emphasis on the
positive (as with the bias in favor of the publication of positive findings
or the emphasis on the benefits of prevention to the neglect of its harms),
this nocebo possibility has received little attention. Yet it’s well documented
that complaints can grow worse as a result of the way they are labeled and
interpreted.
A seminal study of the psychology of physical symptoms concludes
that we construe our symptoms with the help of “schemas” or interpre-
tive guidelines and monitor ourselves for sensations that confirm them.
DSM AND THE SHAPING OF DEPRESSION 23

“An excellent example of this process can be seen with placebos: A


person takes a pill that is supposed to have a specific effect; the person
closely monitors his or her body for signs of the effect and, given the
ambiguous nature of most sensations, is able to find sensory confirma-
tion of the pill’s effectiveness.”128 While a diagnosis represents a pow-
erful schema guiding interpretation of our own states, it may act like
a nocebo, rather than a placebo, warping our understanding even as it
finds confirmation. In an actual case, a woman informed mistakenly by
two doctors that she had parasites (lice or mites) came to believe just
that, and when informed by a third that she had the DSM disorder of
delusional parasitosis she believed that, too—even though none of the
diagnoses proved correct.

Mrs. B’s story shows what happens when physicians repeatedly get it wrong.
Hypercalcemia, not parasites, would eventually prove to explain Mrs. B’s
pruritus. Like a “good” patient, however, she deferred to physicians’ per-
ceived expertise. They told her she had bugs; she believed them. When they
said she was delusional, she also believed that, providing her own delusional
elaboration.129

That diagnosis engages our tendency to interpret our state in the corre-
sponding light is a strong argument against attaching diagnostic labels to
ordinary conditions.
So potent is the act of diagnosis in and of itself that being labeled with a
medical condition “appears to have a significant psychological impact that
is independent of actual risk factor or disease status.”130 Thus, people with
normal blood pressure who have been mislabeled as hypertensive report
more symptoms of depression than normal controls.131 (For that matter,
people who think of hypertension as a condition caused by stress tend to
report the symptoms associated with the folk disorder Hyper-Tension; of
which more in due course.) So too can people in normal health be led to
believe they suffer from depression—all the more because normal troubles
factor into a diagnosis of depression in the first place, and because a disor-
der that has become as paradoxically popular as depression acquires social
currency in addition to the validity conferred by the DSM. Spitzer and
coauthors caution against stretching the diagnostic boundaries of another
disorder with social currency, PTSD, in part because labeling common
modes of stress or distress as PTSD can spawn “iatrogenic misapprehen-
sions.”132 That is, even a spurious diagnosis of PTSD can convince a patient
that he or she has been genuinely traumatized. While pointing out that
PTSD overlaps depression, the authors do not note that the latter diagnosis
too is boundaryless and can cause misapprehensions. As in these instances,
24 THE NOCEBO EFFECT

the tools of medicalization are a set of exceptionally suggestive labels, all


seemingly validated by the authority of medicine, that readily come to life
in our minds and bodies.
The nocebo effect works chiefly through the power of expectation: We
expect something to produce an adverse result, and so it does. But the
receiver of a diagnosis like depression may also form strong expectations
about the way the disorder is going to behave. “Nocebo and/or nocebo-like
effects can be seen after negative diagnoses, in which the perceived symp-
tom may increase because of negative expectations about the course of the
disease.”133 Thought to be among the factors contributing to the persis-
tence of the symptoms of Mild Traumatic Brain Injury are the expectations
raised by the diagnosis.134 When normal patients learn they suffer from the
disorder ominously named Major Depression, their expectations about the
illness—if only that it’s bound to persist unless treated—are an artifact of
medicine. If diagnosis serves as a vehicle of the nocebo effect, so much the
more does overdiagnosis. “It is plausible to think that clinical misdiagnoses
represent a circumstance where nocebo reactions might occur. Although
well-documented case reports are lacking, assigning a diagnosis without
objective physical evidence may make patients worse, and result in det-
rimental nocebo effects.”135 Yet there are no objective tests for psychiatric
diagnoses, which again exposes the receiver to the possibility of nocebo
outcomes. Certainly many a child diagnosed with ADHD must implicitly
expect to show traits associated with ADHD, no matter how inflated the
diagnosis may be.136 What does it mean for children to receive a diagnosis
they can’t possibly know to be ill-founded, but which is incorporated into
their sense of self as they grow up?137
If many a patient “would likely start to suffer from the effects they imag-
ine high cholesterol brings if faced with their lipid levels,”138 so too will
patients feel the effects of diagnosed mental disorders that actually have
symptoms, all the more if the symptoms happen to be misleadingly com-
mon. Specially impressionable are children. Yet medical discussions of
overdiagnosis largely neglect the impact of the diagnosis on the patient,
except to decry the stigma attached to medical and especially psychiat-
ric labels. Little if anything is said about what might happen to normal
people given to believe that they suffer from a disorder—the inevitable
consequence of diagnostic inflation. Particularly revealing in this connec-
tion is D. L. Rosenhan’s famous paper, “On Being Sane in Insane Places”
(1973), reporting on a sort of naturalistic experiment in which eight sane
individuals, including the author, presented themselves at psychiatric hos-
pitals claiming to have heard voices. Diagnosed as suffering from schizo-
phrenia (in one case, manic-depressive psychosis), they were admitted and
DSM AND THE SHAPING OF DEPRESSION 25

summarily dehumanized, the label serving to blight the perceptions and


distort the judgments of the staff profoundly, according to the account pro-
vided. In exactly one sentence is the power of a diagnosis to alter a patient’s
understanding acknowledged: “Eventually, the patient himself accepts the
diagnosis, with all of its surplus meanings and expectations, and behaves
accordingly.”139 This observation is stillborn, and in the case at hand the
eight pseudo-patients never conform to their diagnosis or begin to believe
it in any way, even though detained in a psychiatric hospital for as long as
52 days. Thus, even what reads like a uniquely damning critique of psy-
chiatry’s dogmatism and abuses of power—a paper that became a cause
célèbre and has since been cited over twenty-five hundred times—sidelines
the question of the effect of a diagnosis on patients’ understanding of
themselves.
The question cries out to be asked. As a result of pressure to diagnose
dementia in its early stages—even though dementia per se is incurable
while cognitive impairments are common, often don’t progress, and some-
times abate140—many patients stand to receive a diagnosis falsely imply-
ing that they are destined to suffer a catastrophic decline. Are we really to
assume that a diagnosis of progressive dementia can precipitate a suicide
only if true?141
How does a normal but diagnosed patient appear in his or her own
eyes, as opposed to society’s? If the DSM system generates both inflation-
ary increases in diagnosed cases and new markets for drugs, many people
must belong to both categories—must take a drug as a result of an inflated
diagnosis. Clearly, such patients have been persuaded they’re ill. That many
patients come to adopt the biological theory of depression despite the evi-
dence of their own experience that it’s rooted in life circumstances142—this
in itself points to medicine’s power to shape the way we interpret our states.
Moreover, if “a person who is labeled (i.e., diagnosed) as having an illness
will expect to experience specific symptoms,”143 it follows as the night the
day that an inflated diagnosis will also beget an expectation of the associ-
ated symptoms—and the expectation alone makes their occurrence more
likely. However, the authors just quoted don’t consider what receiving an
unfounded diagnosis might do to the patient. Even critics of the rampant
expansion of diagnosis in recent years somehow manage to leave out the
patient’s interiority.144
A telling example of a faddish diagnosis seeping into the mind of the
patient is the case of “Adam” as presented in his own words in a recent
paper. At the age of 12, Adam was diagnosed with pediatric bipolar
disorder—a diagnosis that rose 40-fold in a single decade145—even though
his depression was unipolar and his distress clearly had something to do
26 THE NOCEBO EFFECT

with a severely troubled family life. Yet while the diagnosis of bipolar dis-
order was so incongruous that Adam rejected it, he found himself coming
to believe it anyway. As he explains,

I never really believed the label myself like on an intellectual level, because
like most young people, I always felt there was a reason for my behavior. I
started to put some odd pieces of the puzzle together, like: I have this “dis-
ease” and it only manifests itself at home in the presence of 2–3 people that
happen to be a part of my life. Then I began to wonder why I had never
had another “manic” episode after a few years and realized that adults with
the disorder don’t always go years on end without a relapse of that kind of
“episode.”
I did however sort of believe it, only because if you tell a kid something
long enough, they’ll start to believe it. And of course, if I question my crazi-
ness, that’s part of the “illness.” So I got put in a double bind that really did
make me feel like I was trapped or going crazy.146

While Adam was certainly in distress, it’s not clear that he suffered from
any actual disorder despite being put on a slew of psychoactive drugs.
To the Australian psychiatrist who came to know him his case stands as
a warning example of “the iatrogenic harm of erroneous labeling.”147 The
remarkable thing about Adam’s account is not the tale of being torn by
conflicting beliefs as a result of a wrongheaded but wildly popular diagno-
sis, but the fact that it appears in a medical paper at all. Patients’ voices are
conspicuously absent from the medical literature.
Over its course, this study will offer diverse examples of the power of
medical labels, even false ones, over a patient’s experience. I see no reason
to suppose that DSM labels like “bipolar disorder” have less influence over
mind and body. In estimating the power of misplaced belief in diagnostic
fashions driven by the DSM system, it’s important to bear in mind that
DSM-III was the solution to an acute crisis of confidence in psychiatry, a
crisis that saw psychiatry accused not only of masking whim and preju-
dice as objective judgments but of being unable to tell the sane from the
insane, the normal from the crazy.148 The very legitimacy of psychiatry was
sharply impugned by critics who have been known ever after as the school
of “antipsychiatry.” Unlike other institutions, notably the government of
the United States, caught in a credibility crisis at the same time, psychiatry
was in a position to repair its damaged reputation by projecting its identity
as a science and a discipline of medicine. In the end, the means chosen by
the makers of DSM-III to accomplish this task strengthened the credit of
psychiatry immeasurably. It was to standardize diagnosis, thereby creating
the impression that diagnostic judgments simply had to be valid because
they were arrived at by different clinicians following the same rules.149 The
DSM AND THE SHAPING OF DEPRESSION 27

standardization of language that resulted from DSM-III, such that one


hears of Major Depression or PTSD so often they come to seem like natu-
ral entities, is itself a credibility technique of the first importance. In short,
psychiatry emerged from its own discredit with a new power to command
belief, much as if it had learned its lesson. Out of a scandal came a bible. A
patient who believes a DSM diagnosis, whether well founded or not, and
takes it to heart is doing exactly what a diagnostic system designed for
credibility encourages.

Interpretation and Misinterpretation

Of the harms that may follow diagnosis, arguably the worst is that it “may
lead you to regard yourself as forever flawed and incapable of ‘rising above’
your problem.”150 That this message is depressing in itself suggests that a
diagnosis of depression can deliver a double hit. It might also induce the
sort of compliance shown by a certain patient who didn’t like the idea of
taking antidepressants but found herself embracing them:
I think I’ll always regret having started medication even for any of the good
that it did in my life. To not know what I could do on my own without it is
very difficult. I mean, there was a sort of deterioration of resolve in me to get
through anything when I started taking drugs. I sort of felt like, “Well, gee,
now that I’m sick, it’s okay to be sick.”151

Complicating matters even further is that antidepressants give rise to side


effects that resemble symptoms of depression to the point that they’re hard
to tell apart. Thus, in a given instance, it may be unclear even to medicine
whether insomnia represents a symptom of depression or a side effect of
an antidepressant.152 With tricyclics in particular, doctors “must consider
whether the discomforting psychological and somatic symptoms attrib-
uted to the antidepressant medication are actually manifestations of the
mood disorder itself.”153
If symptoms of depression and side effects of treatment can be similar
enough to confuse doctors, patients susceptible to suggestion (as we all
are) could certainly mistake the second for the first, with their medica-
tion inducing effects that read like depression.154 Patients whose depres-
sion verged on normality or who didn’t report themselves depressed
until diagnosed could thus discover appropriate symptoms of the disor-
der in the alphabet soup of side effects served up by their treatment. In
principle, symptoms that occur widely in the general population (such as
fatigue or insomnia), symptoms that belong to a syndrome like depres-
sion, and symptoms produced by antidepressants can all be mistaken for
one another by doctor, patient, or both. The patient who discontinues an
28 THE NOCEBO EFFECT

antidepressant because of its noxious side effects looks like one who drops
out of treatment because he or she is simply depressed. To take a drug for
an ambiguous ailment like depression is to enter a reality where misappre-
hension is always at hand.
Patients on drugs like antidepressants “must come to distinguish side
effects from intended real effects .  .  . They must get a sense of what it’s
like to be one’s real self while on the medications, and so on. These are all
interpretive problems introduced by the medications, from the inside out,
as it were.”155 All such judgments are slippery. Interpretation itself is an
equivocal activity inseparable from the possibility of misinterpretation—
an activity all the more uncertain in the case of someone who is the object
of his or her interpretation, and who may have received an inflated diag-
nosis to begin with. In that the humanities center on the interpretation of
ambiguous evidence and are predicated on the uncertainty that attends it,
problems like those associated with diagnostic inflation and drug effects
invite humanistic reflection.

Medicine and the Humanities

Our tendency to experience what we are cued to expect is strong enough


that those who run clinical trials have to go to the trouble of testing drugs
against placebo and blinding subjects to their group assignment. Though
blinding is poorly documented and often defective,156 with no blind at
all trials would be vitiated because subjects would report the effects they
expect, whether or not they actually derive from the tested treatment. The
landmark Multimodal Treatment Study of Children with ADHD (MTA),
for example, ran various ADHD treatments against one another but not
against placebo, rendering inferences about the efficacy of the treatments
doubtful.157 (That most raters of the subjects’ symptoms weren’t blinded
either compounded the possibility of bias.) Even in blinded trials, mem-
bers of placebo groups routinely report adverse effects associated with
the drug under study, merely because they were alerted to them by the
consent procedure.158 But if subjects under the influence of expectation
can experience all manner of effects, so can patients come to experience
the symptoms linked with and suggested by a given diagnosis. In a study
of responses to screening for risk factors, no sooner were subjects noti-
fied that they had a certain enzyme deficiency that had been invented for
the purposes of the study than they began to notice the symptoms that
supposedly accompanied it.159 Thus, even a completely spurious finding
can set off the process of discovering symptoms. All the more suggestive
are diagnoses with some basis in reality, like the inflated diagnoses autho-
rized by successive editions of the DSM. The surge of these has reached
DSM AND THE SHAPING OF DEPRESSION 29

the point that it was estimated in 2005 that half the American population
stands to be diagnosed with a DSM mental disorder at some point in their
lifetime.160
Such pitfalls are built into the DSM diagnostic system that the chair of
DSM-IV Task Force, now an outspoken critic of DSM-V, has written a book
detailing them, in the course of which he points out that “the DSM men-
tal disorders are no more than descriptive syndromes; they are not neces-
sarily discrete diseases.”161 Some doctors, it seems, have qualms about the
DSM labels they employ, even explaining to the patient that they’re nothing
but instruments of convenience or tags for insurance purposes.162 But if
labels weren’t powerful, they wouldn’t have to be disclaimed; and a discrete
disease—a distinct pathology—is exactly what any patient diagnosed with
a DSM disorder would assume the disorder to be. If the DSM diagnostic
system can muddle professionals to the extent that it calls for a book of
caveats, what can it do to the minds of patients? The medical literature’s
failure even to pose such a question points to a lack of imagination, which
in turn suggests that works of the imagination may have something to say
to our era even if they don’t share current medical assumptions. A world
in which patients suffer the effects of an inflated diagnosis and doctors are
misled by the ambiguity of normality—the world we inhabit—shares much
after all with the world of fiction, where nothing is more common than
entanglement in illusion. Moreover, while medical papers use strictly neu-
tral language—shunning connotation and tonal effects as offenses against
objectivity—the humanities well know that words are surrounded by a sug-
gestive field. From this point of view it makes sense that a label as potent
as “depression” or “ADHD” can exert a suggestive effect whether or not the
diagnosis is valid.
A critic of medicine’s tendency to exceed its own authority could hardly
do better than the humanist Montaigne when he mocks “all the warn-
ing threats, inferences, and complications which Medicine stuffs into our
heads.”163 The other side of this comment on the false certainties of an
arrogant institution is an appreciation of uncertain knowledge, an appre-
ciation that went into the making of the humanities164 and serves us well
even today. Without a due sense of the uncertain, we might take a three-
week trial of an ADHD medication as probative, forgetting that such exer-
cises, even if well conducted, tell us nothing about the long-term effects of
medication or the eventual outcomes of an ADHD diagnosis. The fixation
on clinical trials as the gold standard of medical knowledge can constrict
thinking and has led to such abuses as poor reporting, as noted above. No
trial can be run to determine if a false diagnosis of progressive dementia
can lead to suicide, but a thought-experiment tells us that if a valid diagno-
sis can precipitate that outcome an invalid one can also, if only because the
30 THE NOCEBO EFFECT

patient has no way to know it is invalid. In the midst of a rush to diagnose


dementia in its early stages without sound means to do so, this is material
knowledge.
Moreover, if the clinical trial is the one and only pathway to validity,
then there’s no way to question the medicalization of human life from a
valid position, because a runaway phenomenon simply can’t be repro-
duced in a study.165 (Nor for that matter can a trial determine if depressed
subjects given drugs do better than a comparable group who enter into
new friendships.)166 Notwithstanding the ingenuity of researchers, ethi-
cal considerations also stand in the way of experimentally validated
knowledge. Even if informed consent were given as with fake surgery,
it would be far too risky to run an experiment where subjects received a
deliberately trumped-up psychiatric diagnosis and were then followed for
weeks or months to see what came of it. Studies of the effects of medical
labeling and induced expectations do apply suggestively to the world at
large, but only if you take their implications farther than the authors may
intend and only if you’re willing to hazard the uncertainty of a merely
probable inference. From the essays of Montaigne to the present, work
in the humanities shows that impressive structures can be built on the
seemingly unlikely foundation of uncertainty. It was precisely respect for
the uncertain that underwrote Montaigne’s caustic comments on intellec-
tual systems at once pretentious and unwieldy, including elaborate laws,
scholastic constructs, and of course medical theories. As a critic of medi-
cal overreaching and student of human credulousness, Montaigne would
find nothing absurd in the idea of an inflated diagnosis coming to life in
a patient, and might say that symptoms attributed to an imaginary cause
gain intensity by tapping into the power of imagination itself—the topic
of one of his essays.
Taking as its theme the maxim “Fortis imaginatio generat casum” (a
strong imagination generates the event), Montaigne’s meditation “On the
Power of the Imagination” documents the empire of that faculty over mind
and body while casting doubt on accounts of miracle cures.167 The case
of a patient who acquired the symptoms of a false diagnosis would have
fit right into the essay, perhaps as a complement of the reference to “men
for whom it is enough to look at a medicine for it to prove effective.”168
Elsewhere Montaigne asks, “How many men have been made ill by the
sheer force of imagination?”169 Placebo researchers, in their open-minded
skepticism, seem to be finding their way back to Montaigne, just as their
intriguing experiments recall his consuming interest in experience. (Like
an experiment that puts theory to the test, experience may or may not con-
form to the doctrines and principles that supposedly govern it.) Indeed,
Montaigne himself conducted trials of a sort, testing and recording the
DSM AND THE SHAPING OF DEPRESSION 31

effects of various waters on his kidney stones during his journey to Italy
in 1580–81.170
While we have long since passed Montaigne in the conduct of experi-
ments, in other ways we’re still catching up. Montaigne recounts the tale,
which he had on good authority, of a certain merchant of Toulouse who
graduated from real to imaginary enemas; researchers have shown that
we respond not only to acupuncture per se but to the same procedure
covertly performed with nonpiercing needles—imaginary acupuncture,
in effect. In questioning the attribution of common symptoms to a theo-
rized underlying depression, I too follow Montaigne, who subscribed to
no fixed distinction between mind and body and scoffed at the idea of
dividing a person in two171 but rejected the inference that in his own case
certain somatic signs pointed to mental distress. “My looking-glass never
strikes me with terror,” he writes, “because even in my youth I would often
take on a turbid complexion and a look which boded ill without much
happening, with the result that the doctors, who could find no cause in
my body which produced that outward deterioration, attributed it to my
mind and to some secret passion gnawing away within me. They were in
error.”172
The follies and obsessions leading us to sacrifice health to medicine
are subjected by Montaigne to the same skepticism with which he views
a secret passion declared to exist because its existence seems called for. By
implication, Montaigne also throws into question the promotion of “aware-
ness” in health campaigns today, such as those staged to inform the public
of the signs of depression or social anxiety, or the lack of signs of prostate
cancer. “We are far less aware of perfect health than of the slightest illness,”
he notes, detailing our habit of inventing illnesses and worrying ourselves
with fantasies and prognostications. Far from celebrating an awareness
that’s really a euphemism for anxiety, Montaigne affirms the example of
those who don’t enslave themselves to worry—those like the ploughman
who “only feels ill when he really is ill,” whereas someone more in the know
“often has stone in the mind before stone in the kidney.”173 Montaigne was
on to something. For statistical reasons, if the blood-chemistry offered by
your Wellness Program has 12 tests, the chances are better than even that
one of your values will be abnormal;174 but at least now you’re aware. A
convention of health crusades and driver of the medicalization of ordi-
nary problems, the rhetoric of awareness plants stones in the mind. A study
of the effect of simply informing men of the risks of sexual dysfunction
associated with finasteride (an approved treatment for benign enlargement
of the prostate) found triple the rate of dysfunction “among the patients
aware of the drug side effects compared to those blinded to the drug side
effects.”175 The result is consistent with the entire nocebo literature.
32 THE NOCEBO EFFECT

Cases and Sources

An admirer of Montaigne, the philosopher Stephen Toulmin argued that


rising interest in medical ethics beginning around 1960 served to renew
the study of ethics per se by returning its focus from universal principles
to particular cases. Because of such inescapable realities as the difficulty of
cases and the particularity of obligations, it’s a mistake, Toulmin reasoned,
to view practical decisions in clinical medicine or any other field as a matter
of applying abstract principles. A committee for the protection of human
subjects on which Toulmin served was able to reach agreement because
“instead of ‘deducing’ their opinions about particular cases from general
principles that could lend strength and conviction to those specific opin-
ions, [members of the committee] showed a far greater certitude about par-
ticular cases than they ever achieved about general matters.”176 It’s because
the model of risk/benefit calculation presumes an understanding of the
patient as a particular person, not a generic entity, that such calculation is
strained when the same psychotropic drug is prescribed across the length
and breadth of the marketplace, or when the patient who gets the drug is
viewed for diagnostic purposes as a collection of statutory symptoms.
As it took shape in the Renaissance, the field of discourse we know as
medical ethics showed a lively interest in cases where physicians acting
“like stage managers” tricked patients in the interest of curing them.177
Today theatrical virtuosity is shown in experiments like the knee-surgery
deception, where shamming ceases to be controversial because it already
has some sort of ethical clearance and is exercised in the name of research,
not therapy. Yet even if they excite no controversy, many studies still raise
questions, and in some cases—the word is unavoidable—the most inter-
esting thing about them is how they came to be conducted in the first
place. Read attentively through the eyes of the humanities, such studies
become problems in their own right. Some reflect the historical moment
they are set in, such as a study where subjects had a fake medical test, were
informed that they were at risk for a trivial (but actually nonexistent) con-
dition, and reacted as if their awareness had been raised.178 Quite unwit-
tingly, the exercise mimics the tactics and conventions of medicalization.
Another study responds to concerns over the use of ADHD medication by
children by testing the curious possibility of replacing half the drug with
placebo; not once does it mention the overdiagnosis of ADHD, responsible
for the prescription of so much medication to begin with.179 In a study of
attitudes toward antidepressants where only 30 percent of those eligible
agreed to participate, the authors play down the refusal rate on the grounds
that “no differences in age or gender were found between respondents and
non respondents.”180 It’s as if the study had been run not on persons but
DSM AND THE SHAPING OF DEPRESSION 33

examples of persons. The generic diagnosis, depression, is applied to per-


sons who come to seem generic themselves.
Both an appropriate sense of normality and a due regard for the nature
of particulars—and persons—call into question the practice of attaching
some favored psychiatric diagnosis to multitudes of patients. And that
practice coincides with the hegemony of the DSM. Ironically, just two
years after Toulmin proclaimed the renewal of medical ethics, the arrival
of DSM-III made for a mode of clinical decision-making that runs directly
counter to the focus on case history that he celebrated as truly ethical. Not
only did the new emphasis on tabulating symptoms obviate the investiga-
tion of the patient’s history—an exercise that had become in the hands of
psychoanalysis a road to nowhere—but the diagnosis of mental disorders
was reduced all too often to a deductive operation, a routine task of apply-
ing ready-made definitions to present instances. (Within a few years of
DSM-III there was already talk of computerizing diagnosis.)181 According
to Toulmin, in medical practice as in traditional moral reasoning,

the first indispensable step is to assemble a rich enough “case history.” Until
that has been done, the wise physician will suspend judgment. If he is too
quick to let theoretical considerations influence his clinical analysis, they
may prejudice the collection of a full and accurate case record and so distract
him from what later turn out to have been crucial clues.182

The doctor who sees a patient just long enough to prescribe an antidepres-
sant transforms the process of diagnosis into a cursory confirmation of a
preconceived idea. The age of the DSM seems to have forgotten how rich
cases can be. That’s one reason for my use at times of literary sources. Pre-
cisely in depicting people as agents (often of their own misfortune), the lit-
erature of the imagination reminds us as little else can of the unworthiness
of the ideal of a life under medical or psychiatric management. Besides, if
medicalization exploits “the gray area”183 of our experience—the realm of
the ambiguously normal—the ambiguities of human existence are investi-
gated with incomparable subtlety in the literature of the imagination. Let
one or two examples suffice for now.
Her soul “overflowing with despair, shame, and humiliation,” Natasha
in War and Peace falls ill after nearly eloping with the worthless Anatole
Kuragin. The description of her “grief ” is stamped with the author’s con-
tempt of the all-knowing doctors who pretend to treat her:

The symptoms of Natasha’s illness were that she ate little, slept little, coughed,
and was always low-spirited. The doctors said that she could not get on with-
out medical treatment, so they kept her in the stifling atmosphere of the
town, and the Rostovs did not move to the country that summer of 1812.184
34 THE NOCEBO EFFECT

Whatever they made of the cough, today’s doctors would go down the
inevitable DSM checklist, ticking depressed mood, insomnia, and loss
of appetite, and if they knew what lies behind Natasha’s grief they would
probably also tick “feelings of worthlessness or excessive or inappropriate
guilt,” thus arriving at the doorstep of diagnosis. In the original, not only
does Tolstoy editorialize against the theory that disease acts the same way
in different people, he makes it clear that regardless of symptoms Natasha’s
illness isn’t a medical matter at all—its source is entirely moral, residing
in a series of events the doctors know nothing of, just as its cure comes
with the passage of time and not as a consequence of treatment. Yet while
Tolstoy’s proclaimed philosophy leads to the dead end of medical nihilism,
his account of the ritualistic administration of pills and powders is remark-
ably subtle and nuanced, suggesting that treatment is variously beneficial,
harmful, and simply irrelevant. In the antidepressant era, all three possi-
bilities remain in play.
It was during Tolstoy’s lifetime that medicine first acquired the status of
a science, though to Tolstoy himself that status was nothing but an auda-
cious sham. The image of doctors as imposing pretenders is fixed unfor-
gettably in the reader’s mind by Tolstoy, especially perhaps in his medical
novella, The Death of Ivan Ilych (whose hero dies in 1882, the year of Koch’s
revolutionary discovery of the bacillus responsible for tuberculosis). But
as concerned as it is with the vanity of medicine, the novella also exposes
the nothingness of the hero’s own work as a bureaucratic enforcer of a new
legal code, as if the legal make-work of sorting cases and the medical cha-
rade of handling cases were reflections of one another. Where does the
similarity lie? Evidently in a drive for classification, the same imperative
that saw the compilation of international statistics on the causes of death
in the later nineteenth century, around the time of The Death of Ivan Ilych.
(Significantly, the exact cause of the hero’s death in Tolstoy’s tale remains
a complete mystery.) From these statistical manuals evolved the Interna-
tional Classification of Diseases, now in its tenth edition, and often cited
in psychiatric literature alongside the DSM. I attempt to view the DSM not
as a settled document whose existence and even authority are to be taken
for granted—how could it be settled when it’s frequently revised?—but a
document as new to our age as the international organization of medical
data was to Tolstoy’s.
Tolstoy himself passed through a period of suicidal misery for which
“depression” seems too light a word, but which he firmly maintains was not
a medical issue. (“Far from being insane or mentally diseased, I enjoyed on
the contrary a strength of mind and body such as I have seldom met with
among men of my kind.”)185 Had he been somehow cured of his misery by
the intervention of medicine, he would have been denied the experience
DSM AND THE SHAPING OF DEPRESSION 35

that set the course for the rest of his life. A philosopher on whom Tolstoy
was a strong influence also wrestled with suicide. On his return to civilian
life following the First World War, Wittgenstein sank into despair:

The defeat and impoverishment of his home country, the death of his most
beloved friend, the frustration at not being able to re-establish old friend-
ships and the strain of putting his whole life on a new footing might them-
selves be sufficient to account for Wittgenstein’s suicidal state during the
autumn of 1919. But perhaps the most important cause of his depression
was his failure to find a publisher for the Tractatus—or even a single person
who understood it.186

What would be the point of reducing such a well-founded despair to a dis-


order that conforms to generic DSM criteria? One can be depressed for
solid reasons. Maybe the author of Ecclesiastes refers to a state when he
writes, “Therefore I hated life; because the work that is wrought under the
sun is grievous unto me: for all is vanity and vexation of spirit.” Nothing is
gained and something lost by viewing such disenchantment with life as a
clinical condition. We fool ourselves if we think our possession of a clinical
lexicon and a diagnostic checklist puts us in a position to understand those
who came before us better, perhaps, than they understood themselves.
Much as the ideal of progress leads to the interpretation of the past as
the story of humanity’s search for the present, so belief in medicine as the
last word in human understanding leads some to read the literature of
former centuries as a prefiguration of our own knowledge. Maybe some-
one has interpreted Penelope as suffering from Major Depression because
she weeps copiously, can’t sleep, loses her appetite at one point,187 and
wishes Artemis would put an end to her existence, even though Penelope
is portrayed as suffering not from a mental disorder—after all, she’s said
to be “circumspect,” that is cautious, reflective, clear-minded, mentally
resourceful—but from the absence of her husband. The temptation to read
characters out of context, as specimens of DSM disorders, applies even in
the instance of one DSM diagnosis whose symptoms are set in a context:
PTSD. Recently, an article in the British Journal of Psychiatry188 claimed
that Shakespeare anticipated the DSM-IV-TR diagnosis of PTSD in the
flashbacks, disturbed sleep, and emotional withdrawal of Hotspur in I
Henry IV, whose wife chides him as follows:

O, my good lord, why are you thus alone?


For what offence have I this fortnight been
A banish’d woman from my Harry’s bed?
Tell me, sweet lord, what is’t that takes from thee
Thy stomach, pleasure and thy golden sleep?
36 THE NOCEBO EFFECT

Why dost thou bend thine eyes upon the earth,


And start so often when thou sit’st alone?
Why hast thou lost the fresh blood in thy cheeks;
And given my treasures and my rights of thee
To thick-eyed musing and curst melancholy?
In thy faint slumbers I by thee have watch’d,
And heard thee murmur tales of iron wars;
Speak terms of manage [horsemanship] to thy bounding steed;
Cry ‘Courage! to the field!’ . . .
Thy spirit within thee hath been so at war,
And thus hath so bestirr’d thee in thy sleep,
That beads of sweat have stood upon thy brow
Like bubbles in a late-disturbed stream;
And in thy face strange motions have appear’d,
Such as we see when men restrain their breath
On some great sudden hest. O, what portents are these?
Some heavy business hath my lord in hand,
And I must know it, else he loves me not.

If Hotspur suffers from post-traumatic stress rather than the more amor-
phous and less clinical melancholy named by Lady Hotspur, he had to be
traumatized in the first place. (According to the DSM criteria mentioned
but not cited in the BJP article, the response to the causal event had to be
marked by “intense fear, helplessness, or horror.”) But as anyone who has
ever read or seen 1 Henry IV knows, Hotspur, far from being traumatized
by war, can’t wait to be on the battlefield, rejoices in combat, lives for it.
“Come, let me taste my horse.” Let it be noted too that the quoted speech is
embedded in a scene of loving banter between husband and wife.
The PTSD diagnosis uniquely supports my claim that the credibil-
ity of DSM-III profited by the loss of credibility suffered by American
institutions—in this case the government and military above all, but also
the secondary institutions collectively known as society. According to the
original proponents of the diagnosis that came to be PTSD, what made
the experience of the Vietnam veteran so wounding wasn’t the savagery
of the conflict per se, but the savagery of the conflict compounded by the
betrayal of those who fought it at the hands of their own government,
commanders, and fellow citizens. Though PTSD came to be framed more
generally, the inspiration for the diagnosis was the feeling of many a vet-
eran that they were deceived and abused both by the powers that be and
“society at large.”189 It goes without saying that Hotspur’s conviction that
he and his clan have been betrayed is nothing like this. In contrast to the
veteran who confronts a hypocrisy hard to pin down because so many
people are party to it, Hotspur’s indignation focuses on a single offender,
DSM AND THE SHAPING OF DEPRESSION 37

the king. He has no sense of betrayal at the hands of anything as anony-


mous and collective as society, and suffers no loss of belief in his ideals. He
may believe in them more fervently than ever.
We will return to Hotspur. But while the claim that this glory-intoxicated
warrior shows the telltale signs of PTSD tells us nothing about either him
or Shakespeare, it does point to the sort of tendentious interpretation that
anyone can fall into if conclusions are given in advance. Once DSM came
to be seen as the alpha and the omega of psychiatric diagnosis—once
quasi-biblical status was awarded to a manual born of shifting paradigms,
intellectual fashion, therapeutic zeal, acrimonious debate, and repeated
revision—such interpretations became an ever-present possibility.
2

The Ills of Health

The Symptom Pool

Rooting philosophy not in theory but common practice, Wittgenstein’s


Philosophical Investigations refers at many points to games and leads us to
wonder what, say, the Olympic games, hopscotch, solitaire, baseball, and
dice have in common. According to Wittgenstein, the answer is: nothing
you can put your finger on. There’s no component each and every activity
known as a game has to have in order to qualify as a game, which doesn’t
mean we don’t know what we’re talking about when, “under normal cir-
cumstances,” we call something a game. A game is “a concept with blurred
edges.”1 The technique of referring philosophy to the activities of everyday
life was intended by Wittgenstein as a kind of therapy, a healthy correc-
tive to the discipline’s ingrained habits. Not only did Wittgenstein seek to
remind philosophy of the priority of practice, he thought of abandoning
philosophy to take up medicine. Had he done so, he would have found that
the concept of health has its own blurriness—that we can be in a state of
health, for example, while still subject to many ills.
William James, the pioneer of psychology, suffered for years from head-
aches, insomnia, fatigue, back pain, gastritis, constipation, nerves2—a
catalogue more striking for its length than its elements. While few of us,
perhaps, can lay claim to as many of these ills as James, we would be hard
pressed to find someone who was a stranger to them all. Such ailments pre-
sumably account for the frequency of medical visits where no cause for the
patient’s distress can be assigned—a rate once calculated at 40–60 percent
for the general practitioner in the UK.3 By some estimates, rates of minor
symptoms in the general population run as high as 80 percent, and severe
symptoms without a medical explanation, 30 percent.4 The prevalence of
complaints of one sort or another is such that reports of adverse effects
of drugs in clinical trials are meaningless unless the base rate of the same
40 THE NOCEBO EFFECT

events is factored in. In a revealing study published in 1968, of 414 healthy


volunteers only 19 percent reported experiencing none of 25 listed symp-
toms over the previous 72 hours. A handful reported a half-dozen or more,
though it bears noting that in this case to report means to check a box
on a form, not to offer information unprompted.5 It’s also significant that
despite the appearance of an inventory, some of the symptoms are vague
(“weakness,” “inability to concentrate”) and some seem to overlap (“exces-
sive sleepiness,” “fatigue”). Many resemble raw material available for shap-
ing into more definite form.
An outbreak of chronic fatigue in the 1980s traces to a group of patients
in Nevada who, it is said, presented such “odd symptoms” as abdominal
pain, headaches, dizziness, aching joints, and general weakness.6 As with
the ills that went into the making of a cognate disorder known as neur-
asthenia (another of James’s ailments, if it wasn’t a master syndrome that
spanned them all), it’s immediately clear that such odd symptoms are in
fact common occurrences. In a 1994 study of 1,000 arbitrarily selected
primary-care patients, 19 percent reported abdominal pain on a question-
naire, 36 percent headaches, 23 percent dizziness, 58 percent joint or limb
pain, and, as noted, 58 percent fatigue.7 The sheer prevalence of many ills
can play havoc with diagnostic practices and estimates. One reason the first
generation of surveys of mental distress in the community at large found
only a minor percentage of the population to be symptom-free is that they
included on the checklist innocuous symptoms like “trouble getting to
sleep.”8 As we know, a number of the symptoms of depression according
to the authoritative Diagnostic and Statistical Manual, including fatigue,
insomnia, and problems with concentration, are common in a healthy
population. Considering that most depression is diagnosed in primary care
and that the most common presenting symptoms are everyday complaints
like fatigue or sleep trouble9—not, in fact, hopelessness—ordinary ills are
deeply implicated in the depression epidemic of recent years. Because
many symptoms have no medical explanation, they’re available for attribu-
tion to depression, and it seems all that needs doing to transform them into
telltale signs of depression is to presume they are just that. According to the
DSM criteria for depression that have been in place for over 30 years, an
ordinary problem like fatigue carries exactly the same diagnostic weight as
a suicide attempt.10
Something changes when such commonplace symptoms as fatigue grow
into an illness called chronic fatigue, or such generic ills as sleep prob-
lems become omens of a condition as dark as depression—or as the DSM
designates it, Major Depressive Disorder. Just as ordinary aches and pains
can acquire new meaning as symptoms of a diagnosed disease even if the
diagnosis is unfounded or has been revoked,11 so the process of organizing
THE ILLS OF HEALTH 41

common symptoms into a connotative syndrome or disorder can trans-


form the symptoms themselves. Patients can experience symptoms in
different ways depending not only on the cause they attribute them to12
but on the way they’re organized and labeled. Patients with irritable bowel
syndrome (IBS) have intestinal complaints, and those with fibromyalgia
have general aching, pain, and fatigue, and yet in many cases these patients
could be diagnosed in the other category by a different doctor. “Clearly,
fibromyalgia and irritable bowel syndrome must be the same or very simi-
lar disorders.”13
Both in the disputed disorder, chronic fatigue syndrome (CFS), and in
the authorized disorder, depression, ambiguously normal symptoms can
support a troubling but ironically popular diagnosis. Additionally, the very
format of the diagnostic criteria for CFS resembles the DSM menu for
depression:

A case of the chronic fatigue syndrome must fulfill major criteria 1 and 2,
and the following minor criteria: 6 or more of the 11 symptom criteria and 2
or more of the 3 physical criteria; or 8 or more of the 11 symptom criteria.14

Reinforcing the analogy is that depression figures among the criteria for
CFS, fatigue figures among the criteria for depression, and other symp-
toms (sleep disturbance and inability to concentrate) are common to both.
Recall too that depression is often diagnosed in primary care on the basis
of somatic complaints that are medically unexplained, like those of CFS.
Yet syndromes like CFS are seen in the medical literature as both cause and
effect of a noxious process of magnifying ordinary symptoms. What the
proposed analogy suggests, then, is that both patients and medicine itself
can exacerbate ailments that are part and parcel of human life by molding
them into disturbing syndromes that somehow catch the spirit of the times
and the imagination of many.
Part of the common lexicon not long ago were rough-and-ready medi-
cal explanations like “nerves” that denoted nothing specific but did serve
to cover some of the ailments of normality. Arguably, what distinguishes
postmodern patients isn’t that they experience more or worse ills, but that
they’re so tuned to the problems inseparable from normality, “the eternal
twitches and twinges to which humankind is heir.”15 A New York Times
article a few years ago focused on young people who choose their own
prescription drugs and acquire them through trade or purchase, the bet-
ter to manage their stress, fatigue, anxiety, and defects of concentration.16
Complaints like these are part of everyday existence and occur widely in
the general population, which helps explain why some would be reported
by placebo groups in clinical trials. Events that normally blend into the
42 THE NOCEBO EFFECT

background of our experience may have the makings of something more


serious. Mild traumatic brain injuries (MTBIs) are hard to diagnose not
only because the symptoms are subjective and nonspecific but because
healthy persons “report very similar symptoms.”17 A study published in
1988 found no significant difference in the rate of memory problems,
fatigue, irritability, and impatience in normal and head-injured subjects.18
Precisely because the symptoms of MTBIs are something like exaggera-
tions of normal conditions, they are easily faked.19
As in these cases, symptoms intrinsic to everyday life can serve as
components of disorders for which no medical cause can be found. One
reason for the overlapping features of a number of disputed syndromes,
including IBS, fibromyalgia, and CFS, is that they draw on and are pow-
ered by kindred sensations, normally not very salient but now heightened
and reinforced.20 However, conditions thought of as specific can also be
hard to distinguish. “It is extremely difficult,” for example, “to determine
if a person’s self-reported symptoms are due to depression, a persistent
postconcussion syndrome, or both because many of the symptoms are
identical in these conditions.”21 As disturbing as they are to the patient,
the symptoms in question, including fatigue, indecisiveness, poor concen-
tration, and sleep problems, are entirely generic. Just as doctors may not
recognize headache or aching joints as side effects of a given medication
for the simple reason that these events are so common that the signal is lost
in background noise,22 so the background presence of common ills like
fatigue can complicate diagnosis. Clearly, sensations of distress inhere in
normality. So, however, do potentially more troubling conditions.
Prostate cancer occurs broadly in the male population, becoming more
common with advancing age. In the Prostate Cancer Prevention Trial
(PCPT), the disease was found in no less than 24.4 percent of the placebo
group—men at low risk, according to the study’s entry criteria.23 As a result
of the study protocol, participants may have undergone more intensive
searching than men in the general population, but if their prostates had
been removed and examined under a microscope, still more cancer would
have been found. According to FDA estimates based on autopsy studies,
latent prostate cancer exists in 40–70 percent of men aged 50–79 who died
from other causes.24 (For ambiguously normal conditions, prevalence
estimates with broad spreads are themselves common. Estimates of mild
cognitive impairment “range widely, from 3% to 42% in adults aged 65
years and older.”)25 Considering that at some point in the age continuum
over 50 percent of men have prostate cancer, while less than 3 percent of
men die of it, it’s hard to deny that some form of the condition is normal.
In the 1970s the American Cancer Society and the National Can-
cer Institute proposed that women at high risk of breast cancer undergo
THE ILLS OF HEALTH 43

mammography, with “high risk” defined to include perhaps 80 percent of


women from 35 to 50 years of age,26 which amounts to a virtual oxymoron.
(Similarly questionable are claims that as much as half the population of
the United States—though perhaps as little as a fifth—and fully 94 percent
of a representative population of New Zealanders, have high cholesterol.)27
The transformation of normal conditions into medical problems—what
has come to be known as medicalization—courts the same paradox. Pro-
pelled by messages aimed at tens of millions, medicalization speaks the
idiom of specificity, referring impressively to distinct disorders, numerical
data, and seemingly precise criteria, yet casts the widest, most general net
possible. The DSM has been a major player in this drama of expanding
definitions. While the DSM criteria for mental disorders seem exact and
specific, no sooner does a psychoactive drug addressed to one of them hit
the market than millions of cases are diagnosed, in good part because the
diagnostic criteria are far less restrictive than they appear.
Unlike fatigue or headache, latent cancer is likely to be imperceptible
to the patient, which may only make it more insidious. Ironically enough,
however, some argue that depression too can be invisible to the sufferer;
and once we add psychological distresses to the list of common ailments,
an already deep pool becomes bottomless. It’s in part because of the uni-
versality of its symptoms that crusaders against depression have been able
to claim high rates of the disorder in the general population. The same fac-
tor suggests why the mildly depressed who are not identified and treated
in primary care seem to do well enough on their own,28 as well as why
so many classified as depressed improve on placebo in clinical trials of
antidepressants. The general population has been conscripted into many
disorders besides depression. It became possible to say social phobia was
disturbingly prevalent as soon as common dislikes, such as the aversion
to speaking to someone in authority or to being criticized, were defined
as presumptive symptoms. The symptoms of many theoretically specific
disorders overlap, quite as if common problems were being configured in
different ways. Undoubtedly, if to be normal or healthy our existence has
to be perfectly cloudless, then anyone and everyone is going to be sick.
The World Health Organization definition of health as “a state of complete
physical, mental, and social well-being and not merely the absence of infir-
mity” might make sense in a utopia but has no application to terrestrial
human life.29
“Patients feel anxious; they feel gloomy; they can’t sleep and their blood
pressure suddenly goes up; their bowels won’t work, or work too well. These
are, if you will, ‘psychiatric disorders,’ or even better, ‘mental illness’! But in
fact they are the quotidian lot of us all, as common as the common cold.”30
As it happens, the common cold itself can be inflated into a medical matter.
44 THE NOCEBO EFFECT

In the K. B. Thomas study of patients with minor complaints, the most


common presenting symptoms were coughs, sore throats, and colds,31 not
that the three are conceptually distinct. (It’s indicative of the nonspecific-
ity of many of our ailments and the arbitrariness of our ways of parsing
them that symptom checklists often contain partial matches and confusing
doublings.) So too, in flu season or in the midst of an actual outbreak, the
common cold readily takes on the appearance of the more serious illness.
And in Japan, SSRIs were popularized with the help of a campaign likening
depression to “a cold of the soul”32—presumably without the implication
that depression will resolve by itself.
Similarly, in a climate of opinion favoring the redefinition of normal
conditions as medical problems, wavering concentration becomes a pre-
sumed symptom of ADHD. The point is that such difficulties are, once
again, perfectly ordinary. In the study of 414 healthy volunteers conducted
in 1968, a dozen years before the diagnosis of ADD was introduced,
25 percent of medical subjects and (as noted above) 27 percent of non-
medical subjects reported an inability to concentrate. With a little defini-
tional tinkering it might in fact be possible to produce an ADHD rate in
the general population of 25 percent, the rate of “subthreshold” symptoms
found in one study among subjects’ relatives without ADHD.33 In a study
of whiplash, poor concentration was identified as belonging to the “general
symptom pool” of normal persons, along with such other prosaic ills as
headaches and disturbed sleep.34 In an experiment that looked into the pos-
sibility of distinguishing faked from genuine ADHD, 37 percent of partici-
pants asked to respond honestly reported that they sometimes had trouble
paying attention. The authors conclude appropriately that “the symptoms
of ADHD are somewhat ubiquitous,” adding that an adult with an inter-
est in exhibiting ADHD need only exaggerate existing symptoms, which is
easier than fabricating symptoms out of whole cloth.35 By the same token,
a nonmalingerer who learned that wavering concentration is a symptom of
ADHD could find that symptom reinforced by a label all at once sugges-
tive, explanatory, socially accepted, and catchy. Labels—words—matter. A
paper by a leading researcher of the placebo effect carries the title, “How
the Doctor’s Words Affect the Patient’s Brain.”36
As originally formulated by Talcott Parsons, the sick role confers an
exemption from ordinary responsibilities and may be sought for that rea-
son. Yet the motives recommending the sick role don’t have to be cynical;
that is, the candidate for the rights and status of sickness doesn’t have to
engage in deliberate dissimulation, just as college students claiming ADHD
and the exemptions it brings may be sincere even if ADHD itself is a ques-
tionable construct and its symptoms often variants of normality. Among
the most disturbing aspects of medicalization is its power to make inflated
THE ILLS OF HEALTH 45

diagnoses completely believable to the public and patients themselves.


Regarding depression, it’s been said that “progress in effectively treating
[it] with psychotropic medication has resulted in increased treatment of a
condition about which physicians believe they can at least do some good,
and perhaps it has motivated diagnosis of formerly ambiguous cases as
depression in the hope of offering effective treatment.”37 But patients pick
up on doctors’ beliefs. Thus the very activism that inspires the construc-
tion of ambiguous signs as evidence of a disorder like depression adds to
the credibility of the diagnosis. If the “effective” treatment proves to be a
glorified placebo, then medical and public confidence in the placebo effect
assists in the promotion of ambiguous cases to clinical status.

Medicalization

As historically novel as the idea of taking a pill to relieve a mood problem


may be, medicine could not position itself as the arbiter of everyday life
unless it already had the right to do so. Only because traditional judgments
have been giving way to medical or clinical ones (“drunkenness” to “alco-
holism”) for a century and more38 is psychiatry in particular now able to
claim human life in its entirety as its writ.
With medicine enjoying a prestige that other institutions seem to have
lost, the advance of medicalization has met little or no resistance in many
cases. Sometimes preexisting diseases or disorders are simply stretched to
take in more cases, as lowering the threshold for high cholesterol summar-
ily expanded the market for statins by 40 million patients.39 Other medi-
cal conditions have been built from the ground up. ADHD, social anxiety
disorder (SAD), erectile dysfunction (ED): ailments like these are now so
much a part of our lexicon that it’s hard to remember that not long ago they
didn’t exist. They were created and popularized like products per se and
are often inseparably associated with the emblematic products of the era of
medicalization: pills. Both ED and SAD rose to popularity in tandem with
the marketing of a pill, and in both cases the treatment gives the condition
a semblance of reality and medical status. If a pill for a disorder exists, the
disorder itself seems to also, all the more if illness “has come gradually to
be defined in terms of that to which it ‘responds.’”40 Erectile Disorder is
listed as a mental disorder in DSM-V.
Looked into, medicalization reveals itself not as an irresistible trend or
a police measure imposed on a passive public, but a process of persuasion,
and greatly enhancing its rhetorical power is a tidal effect whereby medi-
cal activism in different realms is swept up in a common movement. Suc-
cessive editions of the DSM guide the diagnosis and treatment of mental
disorders even though “it must be admitted that no definition adequately
46 THE NOCEBO EFFECT

specifies precise boundaries for the concept of ‘mental disorder,’” in the


words of DSM-IV. The diagnosis and treatment of prostate cancer proceed
even though nothing like a reliable boundary between a normal condi-
tion and one in need of treatment is known to medicine in this case either.
The two issues mirror one another in some detail, as we’ll see, not because
urologists are guided by psychiatrists or vice versa, but because all parties
are caught up in the same general movement. Their ways of speaking about
ambiguously normal conditions may be specific to their discipline, but in a
larger sense they reflect and are propelled by the process of medicalization
itself. As a result of the same powerful trend, many now urge doctors to
identify predementia even though mild cognitive impairments are com-
mon, progression to full-blown dementia is rare, no reliable biomarkers
exist, and neither do treatments.41
Medicalization is a campaign for hearts and minds whose tactics include
everything from public service announcements (a term implying some-
thing above controversy) to blood draws in churches. If common conditions
come to be defined and treated as medical problems, it’s because society at
large has been convinced that is what they are, and this in turn is pos-
sible only if the harms of medicalization are muted. A few years ago, a duly
critical analysis of press coverage of medicine found that a solid majority of
stories fail “to adequately address costs, harms, benefits, the quality of evi-
dence, and the existence of other treatment options.”42 (Similar criticisms
have been made of the medical literature as well.) Also serving as advertise-
ments for medicalization are screening campaigns, diagnostic checklists
and questionnaires, and their trappings and terminology. All are impres-
sive exercises, all convey strong suggestions, and all foster the impression
that the condition in question is specific—a valid and determinate medical
entity. The aura of specificity is a strong persuader. However, if a disorder
really is specific, it’s likely to occur much less frequently than generic prob-
lems, which are commonplace by their nature. Those interested in expand-
ing the domain of medicine will therefore seek to mine the potential of
generic problems—the ills of health—by making them resemble a medi-
cal condition with a solid definition, legitimate diagnostic criteria, often
a specific (if theorized) cause, and an accredited treatment, usually a pill.
When ordinary ills acquire the furnishings of specificity in this way, they
also acquire a weight they might not otherwise possess, just as they stand
out more strongly, hence attract attention more strongly, because of their
certified character and seemingly independent existence. This study argues
that medicalization both exploits common symptoms and promotes the
heightened attention to symptoms that is known to inflame them. It argues
further that medicalization unbalances the calculation of harms and ben-
efits and produces harm by subjecting patients to unnecessary treatment.
THE ILLS OF HEALTH 47

Not only do the DSM-III criteria for depression tap into the ills of
health, but in one instance they define a moral trait—possibly a commend-
able one—as a symptom. Among the secondary symptoms of depression
according to DSM-III are “feelings of worthlessness, self-reproach, or
excessive or inappropriate guilt (either may be delusional),” which is to
say that in the eyes of the makers of the DSM revolution any degree of
self-reproach was pathological.43 (The Feighner criteria likewise list “feel-
ings of self-reproach or guilt,” whether well-founded or delusional, among
the symptoms of depression. Note that while self-reproach and guilt are
equivalent according to the Feighner criteria, DSM-III deems any feeling of
self-reproach, but only inordinate guilt, a symptom of depression.) On this
showing, when Allen Frances, the architect of DSM-IV, confesses that he
and his colleagues “should have been far more active in educating the field
and prospective patients about the risks of overdiagnosis,”44 he displays a
symptom of depression. Why should the entirely warranted self-reproach
he voices be discounted as a mark of a mental disorder? In defense of self-
reproach, the historian of ideas Isaiah Berlin warns that altering our ways
of thinking to make it impossible to say that we shouldn’t have done some-
thing “would do great violence to our present concepts and usages.”45 Only
if human beings lived in a state of innocence would there be no reason,
ever, for us to reproach ourselves. The assumption that any and all self-
reproach is pathological is plainly utopian.
The dream of a new beginning that inspired the making of DSM-III
was a utopian one in itself, implying as it did that it was possible for psy-
chiatry to break free from history, including its own, and attain a kind of
conceptual innocence; at last it would rely on “data rather than opinion or
tradition,” in the words of the Feighner criteria.46 No less utopian is the ideal
of capturing every possible mental ill in managerial language, an ambition
responsible for a document as complex and mutable as a tax code.47 In
place of the laws dictating every aspect of existence in Plato’s happy com-
monwealth of Magnesia, we now have a psychiatric manual of almost a
thousand pages whose purview extends to every facet of private life down
to Spiritual Problems (V62.89) and Problems Related to Lifestyle (V69.9).
It turns out that students who write badly actually suffer from Specific
Learning Disorder, one of whose symptoms is

difficulties with written expression (e.g., makes multiple grammatical or


punctuation errors within sentences; employs poor paragraph organization;
written expression of ideas lacks clarity).

Nothing, not even punctuation, escapes DSM cognizance. And where the
laws in Magnesia speak not as hostile powers but friends, the ordinances of
48 THE NOCEBO EFFECT

the DSM are written in the language of benevolence. In that utopias from
Magnesia forward—worlds where the causes of discord and disease have
been ruled out—are places too good to be true, if not too regimented to be
good, this is a cautionary analogy.48 Even in an imaginary commonwealth,
a price is paid for the establishment of health and happiness. Few of us
would actually care to inhabit the sanitized worlds of the utopian tradi-
tion. There is much to be said for tolerating the imperfections of ordinary
existence.49

The Balance Scale

A groundbreaking study published a half century ago found that of 1,000


adults in the population, as many as 750 experienced illness or injury in a
given month, but of these only one-third saw a doctor.50 A reminder that
ills of all kinds aren’t a departure from normality but the lot of human life,
this study and others like it point to a vast source of exploitable material
available to those intent on expanding the market or boundaries of medi-
cine. More recently, when a sample of some 2,500 persons in Germany
were asked if they had symptoms for which doctors could find no cause,

81.6% reported at least one symptom [over the preceding week] causing
at least mild impairment and 22.1% at least one symptom causing severe
impairment . . . This population survey demonstrates that medically unclear
complaints are an everyday phenomenon. About three out of every four
cases are below clinical relevance.51

But that doesn’t mean such complaints can’t be promoted to clinical rel-
evance. From a marketing point of view, the prevalence of ambiguous
symptoms is a Potosi of possibilities waiting to be shaped into medical
problems. Moreover, the promotion of symptoms into evidence of a disor-
der or disease can set up a reinforcing process, whereby the symptoms are
perceived more vividly just because they now have a ready-made patho-
logical interpretation.
How is clinical relevance to be determined? According to the DSM-
IV criteria for somatization disorder, the act of taking medication for a
complaint gives the complaint significance (which is presumably the same
as relevance): “A somatic complaint is considered to be clinically signifi-
cant if it results in medical treatment (e.g., the taking of medication) or
causes significant impairment.” One would have thought you took medica-
tion because a problem was significant, not that a problem was significant
because you take medication for it. If this test of significance is extended
beyond somatization disorder, then any condition can become of medical
THE ILLS OF HEALTH 49

concern if people can be induced to take a pill for it—in other words, if
enough persuasive power can be brought to bear. Advertising urges me to
take medication for Condition X, and if I do, I myself become an advertise-
ment for the significance of Condition X, reinforcing the original message.
Given the somatic ills inseparable from health, the ambiguity and preva-
lence of conditions like anxiety and depression, and the might of the drug
companies, we can therefore imagine any number of ailments or discon-
tents being elevated to issues of medical concern and treatments of these
conditions being sold to a large, open-ended market.
Before proceeding to the harms introduced by the treatment of nor-
mal conditions, I want to emphasize the blurriness that distinguishes them
despite the seeming-specificity of diagnostic criteria (in the case of DSM
disorders) and the painstaking quantification of medical literature. Untold
millions wouldn’t be eligible for such diseases and disorders if they were
not, in practice, defined liberally enough to include symptoms that blend
into the normal.
While the use of medication to treat common conditions gives them a
veneer of specificity, trials of medications yield their own ambiguities. The
story of the medicalization of shyness turns on the marketing of Paxil, or
paroxetine; and though a review article concluded that three studies appar-
ently found a formulation of paroxetine effective in treating panic disor-
der (a cousin of social phobia, for which Paxil is commonly prescribed),
“according to the corresponding FDA statistical review, only one study was
strongly positive, the second study was non-significant regarding the pri-
mary outcome (and marginally significant for a secondary outcome), and
the third study was clearly negative.”52 The problem of slanted reporting
appears to be endemic in the medical literature, with industry-sponsored
trials yielding positive findings more frequently but also yielding fewer
published reports.53 It’s common practice for industry to publish favor-
able findings while withholding inconclusive or negative ones, possibly in
trials of the same agents. Just that took place in studies of antidepressants,
studies even more unimpressive than the paroxetine trio.54 The dubious
showing of antidepressants in clinical trials may have something to do with
the ambiguity of depression itself—a disorder that includes self-limiting
episodes as well as appropriate responses to life’s sorrows—because it’s the
most severe forms of depression, those most remote from normality, that
most clearly benefit from medication. A number of conditions I consider
in this study, including IBS and ADHD in addition to depression, have
been the subject of questionable reporting in the medical literature.
However, not only psychiatric or psychogenic conditions lend them-
selves to mixed findings. Prostate cancer medicine represents an active
frontier in the expanding empire of medicine, and when the FDA reviewed
50 THE NOCEBO EFFECT

the findings of two trials of drugs to prevent the disease (the PCPT and the
REDUCE Trial), it downgraded the drugs’ alleged benefits on the grounds
that the cancer prevented was in most cases of no clinical significance; it
represented a background condition of normality that had been brought
to the fore only because of the investigative demands of the trials them-
selves.55 Prostate cancer, it seems, spans a blurry continuum, most of which
never manifests itself clinically. The trials in question searched for latent
cancer and found it, but at the expense of promoting a normal condition to
something of alarming import. Thus the more favorable of the two results
was that 39 men would have to take the drug in question in order to spare
one “possibly clinically relevant” case of prostate cancer.56 But the tendency
to focus on and find what you are looking for is by no means limited to
researchers. As I will argue, patients are subject to a similar tendency—and
medicalization plays to it.
Given, then, that normal conditions can be molded into medical prob-
lems such that broad swaths of the population become candidates for treat-
ment, what’s the wrong with this? Not, as some allege, that medicalization
casts a pall of uniformity over the world at large,57 for you could just as
well argue that the creation of scores of new disorders in successive edi-
tions of the DSM has made the world as diverse as a botanical garden.
Nor has the expansion of medical jurisdiction been imposed on an unwill-
ing population. In many cases (CFS, for example), patients themselves
have campaigned for the recognition of new disorders, as indeed millions
prove eager consumers of drugs of questionable medical value. If the trend
toward the creation of medical problems couldn’t proceed without the ills
of normality to fuel it, neither could it have become a trend in the first place
without the consent of the consumer. If men by the thousand are treated
for prostate cancer of dubious significance every year, it isn’t because sur-
gery or radiation is pressed on them against their will, though by the same
token we can fairly question the quality of the information they receive
when screened for the disease to begin with. What opens medicalization to
objection is that by defining normal conditions as pathologies it introduces
harms that weren’t in play until then.
As suggested by the image of the balance scale—an instrument so tra-
ditional it appears in the zodiac sign, Libra—the procedure of weighing
the risks and benefits of medical treatment was never intended for a state
of affairs in which millions of people inspired by campaigns and crusades
seek medical treatments, such as surgery or radiation, that can be harmful
in themselves. The mass marketing of drugs, too, yields outcomes that sim-
ply defy this model of medical decision-making. Of the first blockbuster
drugs, Valium and Librium, Allen Frances concludes that “it is an open
question whether they contributed more harm or good to patients—they
THE ILLS OF HEALTH 51

calmed people down but often addicted them and caused all sorts of with-
drawal problems.”58 Common prudence would argue against prescribing a
drug in a single case, let alone millions of cases, where benefits don’t clearly
outweigh harms. Evidently there was something in the rage for Valium and
Librium—the first market sensations of their kind—that overwhelmed
common prudence. (The allusion to the balance scale in the name “Lib-
rium” is an especially subversive touch.) And that was before the era of
direct-to-consumer advertising.
A potent accelerant of medicalization, the practice of DTC advertising
of drugs was made possible by the Food and Drug Modernization Act of
1997, which lifted the requirement to cite all risks and side effects provided
only that an ad referred the consumer to some other ad that did cite them.
But what does “all risks and side effects” mean? If it means, first of all,
the adverse events tied to drugs in randomized clinical trials, these were
routinely underreported in the medical literature at the time DTC drug
advertising began. Because trial data about adverse events is needed to
estimate benefit/harm ratios,59 the inadequacy of the provided data could
easily compromise calculation of the pros and cons of prescribed drugs.
In cases where the data was reported cursorily or simply buried in com-
pany archives, the literature itself could be as misleading as advertising.
In any case, the upshot of DTC advertising—an inundation of ads pro-
moting a given drug while revealing as little as legally possible about its
drawbacks—illustrates the power of medicalization to drive the question
of harms offstage even as it thrusts new products and disorders into the
public spotlight. Without accepting the claim of Allen Frances that his cau-
tious and well-intentioned work in DSM-IV was abused by Big Pharma
and DTC advertising, it’s hard to deny that the mass marketing of drugs
for ambiguously normal conditions distorts medical reasoning. Clearly,
something has gone wrong with the calculation of risks and benefits when
psychoactive drugs are prescribed for children before good information
about their effects is in hand. Yet just this has occurred. A review of the
practice of pediatric psychopharmacology in 2001 concluded that the pre-
scription of psychoactive drugs for children “has outpaced the empirically
based data on their safety, efficacy, and effectiveness.”60 Among the targeted
pediatric disorders is depression. Considering that a careful meta-analysis
in 2011 found that “consistent and clinically meaningful benefits of antide-
pressant medications, relative to placebo, have not been demonstrated in
depressed children,” it becomes difficult to reconcile pediatric antidepres-
sants with risk/benefit analysis at all.61
Under the combined auspices of the DSM and DTC advertising, many
a medical consultation has been reduced to a hasty ritual of prescription
writing. In a study of doctors’ prescribing practices where actors played
52 THE NOCEBO EFFECT

patients with either major depression or a “trivial” disorder not of medical


concern (hereafter the actor-patient study), 34 percent of the latter group
received antidepressants, branded or generic. In such cases, the authors
conclude, the net therapeutic effect of the drug would be “small and pos-
sibly negative”; that is, harms may outweigh benefits.62 As if pressure from
the patient had more to do with the doctors’ prescribing practices than
consideration of harm and benefit, almost none of the patients with a neg-
ligible disorder who didn’t ask for an antidepressant received one, while
almost half of those who asked did. Presented with patients who required
no medical treatment but sought a drug, doctors wrote the prescription
quite as if the request made the weighing of harms and benefits unneces-
sary. That a patient not suffering from depression would be treated with an
antidepressant is no artificial scenario. “It is possible that efforts to increase
detection and treatment of MDD [Major Depressive Disorder] will result
in treatment of increased numbers of nondepressed patients, who may
be adversely affected by treatment.”63 To which we can add that it’s all the
more possible in that the diagnosis of depression is so much in favor, the
pills to treat it have become a national institution, and the cause of expand-
ing treatment for depression attracts zealous advocacy while the principle
of limiting it doesn’t. Recall too that the DSM-III loosened preexisting cri-
teria for depression.
Further complicating the calculation of the harms and benefits of anti-
depressants is that the benefits spring largely from the placebo effect, a
finding based on the results of both published trials and those unpublished
because they failed to yield the required outcome. Probably because anti-
depressants resemble enhanced placebos, their efficacy seems to wane dra-
matically for many who take them.

For the majority of those who use psychiatric drugs the process involves try-
ing many different medications over time, each one beginning with the hope
of success, but then too often ending in disappointment. The search for the
“right” drug is analogous to the search for Mr. or Ms. Right. Just as people
hold our hope of finding the perfect mate despite repeated disappointments,
those suffering from depression often remain convinced that there’s an ideal
drug for them.64

“Hope of success” is of course a nutrient of the placebo effect; and the pat-
tern of discarded medications echoes the narrative line of medical history,
with one treatment after another falling into disuse as its efficacy vanishes,
for the simple reason that it was a placebo in the first place. But though the
benefits of SSRIs trivially exceed placebo in most cases, their side effects go
well beyond placebo, such that members of the treatment arm in antide-
pressant trials guess their group with a frequency that defies randomness.
THE ILLS OF HEALTH 53

As a result of mass marketing and indiscriminate prescription, countless


patients take SSRIs “that have potentially serious side effects, but produce
no therapeutic benefit for them at all,”65 contrary to the model of balanced
harms and benefits.
When a condition is deemed subject to treatment, it also becomes eligi-
ble for the harms that accompany treatment but are traded off against ben-
efits. “It is a general finding that any effective treatment, even psychological
treatments, must always carry a risk of adverse effects in some—the ques-
tion at issue is always the balance of risk and effects.”66 At least two impli-
cations follow: first, that not recognizing the risk of harm raises the risk;
second, that care should be taken lest a condition is promoted unnecessar-
ily into the ranks of those calling for treatment. The harms of treatment
begin with the side effects of the most popular mode of treatment—
drugs—which in the case of medicalized disorders can be far from negli-
gible and are sometimes so disturbing to patients that large numbers quit
therapy. Though antidepressants seem to be the theme drugs of the DTC
era, their side effects are such that some 45 percent of subjects discontinue
Prozac (fluoxetine)—one of the better tolerated compounds of its class—in
clinical trials of six or eight weeks’ duration,67 while a third of patients in
primary care drop off antidepressants within the first month.68 In a study
of severely depressed patients—the population that stands most to benefit
from antidepressant therapy—one in four discontinued their SSRI, most
often because of side effects.69 (Consider in this connection that “treat-
ing and stopping treatment [for depression] is in general not the same as
not treating in the first instance.”)70 Counting missed doses, as many as
70 percent of patients prescribed antidepressants may be noncompliant.71
The therapeutic and noxious effects of these drugs are so intertwined that
blinded subjects in the trials that establish the efficacy of antidepressants
appear to infer from their headaches, somnolence, and nausea that they’re
taking a real drug—and draw encouragement accordingly.72
While expectation itself can have a lifting effect, it can also work the
other way. “Depression is associated with a pessimistic and negative per-
ception of self and events. In the context of receiving a new medication,
the expectation is thus that the drug is not likely to do anything positive
and probably will make matters worse.”73 However, if the new medication
happens to be an antidepressant, this depressed estimate has more than a
little truth. Conventional risk/benefit calculation would argue against the
routine prescription of a drug with the paradoxical profile of SSRIs. The
history of antidepressant prescription suggests that drugs like Prozac and
Paxil are greeted with enthusiasm not because their side effects are negli-
gible but because they’re less noxious than those of predecessor drugs, the
tricyclic antidepressants, which can be severe.74 While drugs of the Prozac/
54 THE NOCEBO EFFECT

Paxil class look good by comparison, their various effects are still such that
an overwhelming majority of blinded subjects in trials of SSRIs can figure
out that they have been randomized to drug. Moreover, a number of SSRI
side effects, including both somnolence and insomnia, both loss of appetite
and weight gain, as well as loss of libido, cunningly resemble symptoms of
depression itself. The medical literature doesn’t discuss the irony of treating
depression with drugs that mimic many of its statutory symptoms. Con-
cerning sexual side effects in particular, so suggestive is their resemblance
to a DSM-III symptom of depression that some caution against the whole-
sale attribution of adverse sexual events to antidepressants;75 they might be
due to the disorder, not the treatment. The least we can say is that it’s no
easy matter to distinguish the sexually depressing effects of SSRIs from the
condition they are supposed to relieve. The effects continue as long as one
takes the drug.76
Depression lent itself to mass marketing because of the arrival of a new
generation of more tolerable drugs not long after the installation of new
criteria of depression in the DSM: criteria that made the disorder appear
definite and specific, as befits a medical condition, even while extending
eligibility for it to an indeterminate population whose ills are as common
as fatigue, faulty concentration, and sadness itself. Yet sadness by no means
denotes the same thing as depression. How would we view a campaign
to increase Sadness Awareness? Not only does depression seem to war-
rant treatment while sadness doesn’t, but depression caused by a “chemical
imbalance” will presumably remain in place unless and until the problem
is corrected, while sadness may wax and wane with circumstances. And as
the millions of prescriptions written annually for antidepressants testify,
the calculation of harms and benefits changes in a climate of medicaliza-
tion. The chair of the DSM-IV Task Force concedes that this authorita-
tive, internationally cited document—the arbiter of psychiatric diagnosis,
insurance coverage, and much else—“probably resulted in more harm
than good,” the very opposite of what we would expect if harms were duly
weighed against benefits. He maintains, however, that “DSM-IV didn’t by
itself do much harm,”77 implying that if it “resulted” in harm, that was the
fault of those who abused the document’s good intentions. He is less kind
to the latest iteration of the bible of psychiatry, charging that DSM-V “was
prepared without adequate consideration of risk-benefit ratios” and is in
itself, therefore, a harmful document.78
Yet it’s doubtful that DSM-V began the practice of not giving full weight
to obvious possibilities of harm. The former director of the National Insti-
tute of Mental Health describes the diagnostic scheme of DSM-IV as
a sort of artificial system, noting in particular that “the substantial need
for NOS [Not Otherwise Specified] criteria, excessive comorbidity [that
THE ILLS OF HEALTH 55

is, plural diagnoses], the mismatch between real-world populations and


‘pure’ clinical trials samples, arbitrary and rigid diagnostic thresholds, and
the gulf between DSM-IV disorders and emerging results of genetic studies
all point to significant failures inherent in the current DSM-IV classifica-
tion.”79 How could a system so ill adapted to reality, a system with signifi-
cant failures wired into it, not produce harm?
Psychiatry isn’t alone, however, in upsetting the balance scale by sub-
jecting poorly defined conditions to treatments that may be unnecessary,
harmful, or both. In an example of the triumph of medical activism over
medical reasoning, the American Urological Association in its 2009 Best
Practice Statement guardedly recommended screening for prostate can-
cer even while explicitly conceding that its harms may well outweigh its
benefits. The recommendation was based on a study showing that “1410
men would need to be screened and 48 men treated for prevention of one
prostate cancer death over 10 years.” In a sort of Orwellian exercise, these
numbers were adduced by the AUA as evidence of the benefits of mass
screening. “Given the uncertainty that PSA testing results in more benefit
than harm, a thoughtful and broad approach to PSA [screening] is criti-
cal,” the AUA concluded.80 Like the treatment of normal conditions with
psychoactive drugs, the treatment of prostate cancer as a result of mass
screening illustrates a little-recognized risk of medical expansionism: that
it will distort the measurement of risk itself.
To pursue the parallel, whereas SSRIs like Paxil seem benign not
because their side effects are trivial but because they’re less noxious than
their predecessors, drugs with the potential to cut the rate of prostate can-
cer in the general population look promising only because of the harms of
screening the population to begin with. In reviewing the data from clinical
trials of these drugs known as 5-α reductase inhibitors (5-ARIs), the FDA
found that in addition to preventing cancer of doubtful significance they
were associated with an increased risk of cancer of the utmost significance:
high-grade cancer. According to the FDA analysis, “The trade-off inher-
ent in using a 5α-reductase inhibitor for prostate-cancer prevention is the
acceptance of one additional high-grade cancer in order to avert three to
four potentially clinically relevant lower-grade cancers.”81 While the pro-
posal by GlaxoSmithKline—also the maker of Paxil, as it happens—to
market a 5-ARI for preventing prostate cancer was rejected by the FDA, the
proposal itself seemed to defy the logic of medical prudence. The position
that a harm as serious as an elevated risk of aggressive cancer is acceptable
not as a cost of treatment but a cost of reducing the latent cancer to be
found here, there, and everywhere in the aging male population if only you
look for it diligently enough—this dramatizes the possibilities inherent in
the promotion of normal conditions into medical problems.
56 THE NOCEBO EFFECT

A follow-up report on the population of the PCPT published ten years


after the conclusion of the study found that the 5-ARI finasteride “reduced
the risk of prostate cancer by about one third,” but with all of the reduc-
tion falling in the category of cancers that were low-risk already. “High-
grade prostate cancer was more common in the finasteride group than in
the placebo group, but after 18 years of follow-up, there was no significant
between-group difference in the rates of overall survival or survival after
the diagnosis of prostate cancer.”82 That finasteride raised the incidence
of high-grade cancer (3.5 percent of the finasteride group, 3.0 percent of
the placebo group) but not the risk of death suggests that the observed
increase may have been an artifact of detection, as many surmised all
along. But while there was no significant difference in death-rates from all
causes in the placebo and finasteride groups, the confidence interval was
such that the study couldn’t rule out anything from a 30 percent decreased
risk to a 27 percent increased risk of death in the placebo group. Assum-
ing the drug’s effect was neutral, it appears that except as a treatment for
an enlarged prostate (see Chapter 4), finasteride serves only to buffer the
harms of PSA testing itself.

The Value of Normality

If the principle of weighing risks and benefits weren’t itself at risk, it couldn’t
be said that as a result of medicalization “Medicine’s much hailed ability to
help the sick is being challenged by its propensity to harm the healthy.”83
It’s the aggressive expansion of medicine, such that large regions of nor-
mality become subject to its cognizance, that makes such harm possible.
By the same token, the harms authorized by medicalization expose the fal-
lacy of the claim that normality is nothing but a mechanism of repression.
According to that way of thinking, which has taken root in academia owing
in large part to the influence of the French theorist Michel Foucault, nor-
mality is the insidious force that both stigmatizes deviance and imposes the
chilling uniformity that makes modern society what it is. Writes Foucault,

The supervision of normality was firmly encased in a medicine or a psychia-


try that provided it with a sort of ‘scientificity’; it was supported by a judicial
apparatus which, directly or indirectly, gave it legal justification. Thus, in
the shelter of these two considerable protectors, and, indeed, acting as a link
between them . . . a carefully worked out technique for the supervision of
norms has continued to develop right up to the present day.84

The authority of Foucault has reached the point that he’s cited not only in
the medical literature but by critics of medicalization, ironically enough.85
THE ILLS OF HEALTH 57

Normality in Foucault’s sense is a straight and narrow existence policed


by scientific authority.86 Normality in the more positive sense I espouse in
these pages is a liberally imperfect existence that allows for many condi-
tions not subject to medical intervention, or in Foucault’s terms, “disci-
pline.” Normality in this latter sense isn’t repressive but freeing. Because it’s
altogether normal for children’s attention to wander, DSM-V’s citation of
such infractions as fidgeting, “careless mistakes in schoolwork,” and “dif-
ficulty sustaining attention” as evidence of a clinical disorder amounts to
an abuse of medical judgment.
The value of normality is illustrated on the covers of two excellent
critiques of medical expansionism, the first documenting an aggressive
broadening of the boundaries of depression, the second the invention of
social anxiety disorder, both impugning the DSM system that lent these
acts a semblance of medical legitimacy. The first book is subtitled How Psy-
chiatry Transformed Normal Sadness into Depressive Disorder, the second
How Normal Behavior Became a Sickness.87 To each of the authors, clearly,
normality is not an arrangement for subjecting people to medical authority
but, on the contrary, a way of setting limits to medicine. Without a broad
standard of normality, there’s no defense or appeal against the magnifica-
tion into medical problems of any of the ills of health.
As if in reply to the argument that it opens all manner of behavior to
medical intervention, DSM-IV and DSM-V employ a boilerplate clause
stipulating that in order to qualify for a diagnosis the symptoms in ques-
tion must “cause clinically significant distress or impairment in social,
occupational, or other important areas of functioning.” Much as symptom
lists give unspecific disorders an appearance of determinacy, this restric-
tive language provides a semblance of a check on the application of DSM
criteria; in actuality it probably has no restrictive effect, and in any case
comports easily with a document plainly intended to subject more and not
less of human life to medical oversight and management. (It appears some
medical students are diagnosed with ADHD despite obviously function-
ing at a high level.)88 Although the “distress or impairment” clause was
installed in DSM-IV to cut the risk of false positives, the chair of the DSM-
IV Task Force has acknowledged that DSM-IV “did nothing to contain the
rampant diagnostic inflation that was already expanding the boundary of
psychiatry far beyond its competence.”89 It seems the clause was ignored.
The shocking estimate that half the American population will at some
point qualify for a DSM disorder was based on DSM-IV.90
In the actor-patient study conducted while DSM-IV was in effect,
almost half of the “patients” with adjustment disorder received antide-
pressants even though they gave “few signs of cognitive, somatic, social,
or functional impairment.”91 Regarding depression in particular, careful
58 THE NOCEBO EFFECT

investigators conclude that the clause in question does nothing to dimin-


ish “the risk of massive false positives.”92 As a last resort, a patient could be
deemed distressed. If the seemingly restrictive clause has little or no actual
limiting effect, the seemingly strict DSM criteria for depression, taken as
a whole, prove broadly inclusive. Not only is depressed mood an optional,
not required symptom of depression but the generic symptoms like fatigue
have thresholds lower than the primary symptoms. Without a definition
of depression that had authority but was not constraining in practice, the
diagnosis of depression couldn’t have kept up with the marketing of SSRIs
to an open-ended population.
By abandoning or even rejecting the concept of normality, we leave our-
selves open not just to the incursion of medicine into everyday life but
to the immediate possibility of perverse outcomes. Responsible for much
overzealous practice, the medical theory that “any deviations—subtle or
glaring—from a clearly demarcated ‘normal’ [are] to be rooted out”93 goes
awry not because there’s no such thing as normality, but because normality
is an inherently fuzzy condition. Wisdom itself may not be able to distin-
guish spontaneity, zest, and energy from symptoms of hyperactivity and
attention deficits in children.94 Diagnostic zeal certainly can’t.

Magnification of Symptoms

Medical expansionism is objectionable, then, not because it makes the


world less diverse (as noted, sundry disputed conditions have received
medical recognition as a result of lobbying by patients themselves), but
because it produces harm and even changes ways of thinking about harm,
such that the principle, Do No Harm, ceases to apply where it ought to
apply first of all. A measure of the power of medicalization to scramble
calculations is the prescription of Vioxx on the theory that it was less harm-
ful than ordinary anti-inflammatories. Before it was withdrawn from the
market in 2004, this highly advertised drug that was taken for complaints
treatable with aspirin contributed to tens of thousands of hearts attacks
and strokes, many fatal.95 But there are many lesser degrees of harm that
accompany the expansion of medical boundaries. In and of itself, the sort
of marketing of disease inseparable from medicalization can make symp-
toms worse.
To be diagnosed with a specific disorder, even on the basis of nonspe-
cific symptoms, can set up an expectation that the disorder will play itself
out; and expectation is a strong determinant of experience.96 Suppose then
that children who exhibit some inattention or impulsiveness, though of a
kind that would have been deemed normal until recently, receive a diag-
nosis of ADHD. (That this diagnosis has tripled over the last two decades
strongly suggests that normal children are being recruited.) Both diagnosis
THE ILLS OF HEALTH 59

and medication tell ADHD children that something is fundamentally


wrong with them, and those who grow up under the influence of this
provocative message can be convinced that without medication they are
incapable of self-regulation, as theorists of ADHD in fact proclaim. After
all, children are at least as suggestible as college students with a history of
head injury who are falsely cued to believe that their cognitive function
has suffered and then test accordingly, in keeping with the logic of “diag-
nosis threat.” By redefining common symptoms, if they are symptoms, as
a specific, highly evocative disorder, the ADHD diagnosis could well have
the effect of reinforcing them. This might begin to explain how it is that a
condition hard to distinguish from normality, and in the mild to moder-
ate range in the great majority of diagnosed cases, is nevertheless strongly
associated with an entire litany of bad outcomes from auto accidents to lost
jobs, to say nothing of an increased risk of death. The mass diagnosis and
treatment of ADHD constitute an experiment that isn’t even recognized as
an experiment.
With adults, too, labels can come to life. If a child given to believe that
he has a neurologically determined behavior problem can grow into the
problem, an adult who learns to think of herself as a victim of child abuse
can become a victim of the diagnosis.

The problem is that feeling and believing that one is a victim and hence
incompetent can inhibit action. That results in a positive feedback effect,
because acting to improve one’s life—or failing to take such action—can
have a profound influence on belief and feeling. An erroneous belief that
past abuse necessarily has lasting effects can thus lead to drift and a worsen-
ing of the current lives of those who believe they were abused in the past.97

If there’s sure to be some inattention or impulsivity for a diagnosis of ADHD


to latch onto, the retrospective diagnosis of child abuse is “often [made]
on the basis of extraordinarily common symptoms.”98 To the founder of a
popular therapy for PTSD everyone is a candidate for the disorder, because
common experiences “can produce just as many . . . symptoms of PTSD” as
acts of violence, and sometimes more. What are these symptoms? “Similar
to those who suffer from PTSD, we all have the experience of feeling anx-
ious, fearful, jumpy or shut off from others, thoughts we can’t get out of
our heads, guilt, or disturbing dreams.”99 We can only imagine how such
ordinary troubles are inflamed by being recast as symptoms of a disorder
as ominous as PTSD.
Medical labels, too, can be potent. A study done 40 years ago, before
the awareness campaign became a rite of American life, found that when
steelworkers were screened for hypertension, absenteeism on account of
illness rose substantially among previously unaware patients who tested
high, whether or not their hypertension required medical treatment.100
60 THE NOCEBO EFFECT

Maybe awareness isn’t the pure good it’s thought to be. Though hyperten-
sion is generally symptomless, people may report symptoms when told they
have it, even if the numbers they are given are false.101 In many cases, in
fact, the experience of symptoms varies with our expectations as well as our
understanding of what the symptoms are, what causes them, and what they
portend. Though a DSM diagnosis is based on counting symptoms almost
as if they were a unit of measurement, a symptom is after all “a subjective
indication” (as the Oxford English Dictionary puts it), a signal liable to inter-
pretation. I may experience symptom A (say, a sleep problem) differently
when I learn it’s diagnostically connected with a disorder (say, depression)
in a way I never supposed; I may experience symptom B (say, a dislike of
public bathrooms; “shy bladder syndrome” in DSM-V) differently when it’s
lumped with other, seemingly unrelated symptoms (say, an aversion to pub-
lic speaking) in a way that constitutes a disorder. In both cases I confront
a diagnostic whole framing a number of components—a whole, moreover,
that has a clinical definition and status that an everyday problem doesn’t.
Moreover, once I know what a disorder consists of, one symptom may sug-
gest another by association. “Relating symptoms to a specific set may lead
to a false perception and reporting of other symptoms associated with the
set.”102 Whether or not a given symptom is collected with others under the
rubric of a disorder, the awareness acclaimed by the medicalization move-
ment can change the experience that a symptom is. With the spotlight of
medical attention now shining on it, and my attention sharpening accord-
ingly, my symptoms themselves seem to become more strongly defined. Like
imagination in Montaigne, heightened attention animates its objects.
Such attention is itself a sort of adverse effect of participation in a clinical
trial. Subjects in these trials who simply read consent forms specifying the
possible side effects of a test drug commonly report such symptoms—even
from placebos—at a higher rate than controls who aren’t so informed. Two
critics of unwittingly suggestive consent documents therefore urge those
who frame them to give thought to “the harm that may be caused by the
[consent] ritual itself.”103 Our very sensations can be shaped by what we’re
cued to expect, as shown by an ingenious experiment where subjects who
were led by a consent form to expect pain reported pain, and those led to
expect pleasure reported pleasure, from the same stimulus.104 What does
the cuing of such seemingly primary sensations as pleasure and pain have
to do with medical expansionism and the accompanying drive to raise pub-
lic medical awareness? Guided by the finding that subjects whose attention
is drawn to possible side effects tend to report those very events at a higher
rate, I argue that the awareness campaign is a formula for the nocebo effect.
Precisely by intensified awareness of their own symptoms—what the lit-
erature calls hypervigilance—patients without abnormal indications can
THE ILLS OF HEALTH 61

amplify their distress to the point that they’re diagnosed as suffering from a
disorder. For patients in this category, and they are many, raised awareness
is more like the problem than the solution.
A process well known to medicine, symptom amplification can take
place whenever we direct anxious attention toward our own sensations;
and given that even in a state of health we are subject to many adverse
sensations, from headache to abdominal uneasiness, it follows that magni-
fication is a standing possibility. The anxiety that serves to fuel the process
is itself, similarly, a common occurrence; that as many as 25 percent of
subjects treated with placebo may report reactions of anxiety (approxi-
mately the same percentage reporting fatigue)105 suggests that anxiety is a
background condition brought to light by the power of the placebo, much
as symptoms themselves become more pronounced under the influence
of anxious attention. So too, because amplification isn’t a process specifi-
cally linked with certain disorders or syndromes and no others, in any
condition brought to our attention as a medical problem, symptoms—if
it has symptoms—can presumably be amplified. Just as it can’t be said that
consent forms can cue certain sensations but not others (they can even
cue contradictory sensations), so symptom amplification—the probable
mechanism of such induced sensations—can heighten any distress and is
to that extent in play whenever a hitherto normal ailment is promoted to
the level of a medical problem.
We can easily overinterpret internal signals, and if the process is trig-
gered by conditions as dissimilar as whiplash and fibromyalgia, then its
application is likely to be open-ended. The editorial that first pointed out
that consent documents plant suggestions likened the suggestions to pla-
cebos in drug trials, which indeed elicit all kinds of pharmacologically
improbable effects.106 Placebo responses occur at a high though varying
rate across the entire range of clinical trials, whose painstaking design
is dictated in part by the necessity of controlling for them. A process of
symptom amplification that worked even roughly as broadly as the placebo
effect—and human suggestibility didn’t come into the world in the middle
of the twentieth century with the advent of the randomized clinical trial—
would implicate countless millions of people. But while symptom ampli-
fication resembles a nocebo effect, note that the process of amplification
doesn’t call on us to invent sensations out of thin air but simply to work
up what’s already there (as you need only work up common symptoms to
simulate ADHD). In that symptom amplification isn’t limited to a particu-
lar set of disorders and has a rich supply of ore to work with in the general
population, its field of operation is, in fact, indefinite.
In an effort to build the market for a pill for a recently codified disor-
der, a drug company launches a promotional campaign, both direct and
62 THE NOCEBO EFFECT

indirect, to raise awareness of the disorder. To draw attention toward pos-


sible symptoms attunes us to their signal and boosts it. Thus a campaign
to call attention to a disorder, to make it a theme of public discussion, has
an effect similar to that of a suggestive consent form, but by design and on
an incomparably larger scale. After all, if consent forms can increase the
perception and reporting of symptoms,107 that’s also the objective of DTC
ads seeking to instill the notion that, for example, you might be depressed
without realizing it, and ought to see your doctor. It would be absurd to say
a consent form can heighten the perception of symptoms but a full-scale
promotional campaign engineered to do exactly that can’t. That a process
isn’t tightly regulated in the manner of a study but on the contrary rife
with redundancy and exaggeration (like a media campaign that produces a
billion “impressions”)108 doesn’t make it ineffective. The finding that con-
sent forms can magnify the perception of symptoms isn’t just a statement
about consent forms, after all, but about human suggestibility. And while a
consent form can elicit miscellaneous symptoms, it can’t group them into a
disorder that packages, labels, and thereby highlights them.
Along with magnifying symptoms, a disorder can promote an increase
of their number, an effect that comes specially into play in the case of a
condition with many symptoms, such that one has the potential to call
up another by suggestive affinity. Neurasthenia, the disorder that seems
to have framed William James’s diverse complaints, had more than 70
symptoms when it was proclaimed to the world in 1869.109 Being so open-
ended, so much like an anthology of symptoms, it’s no wonder this malady
eluded medical understanding. (See Chapter 8.) Though characterized by
fatigue, neurasthenia was not a specific entity but a kind of charged field
within which one symptom could suggest many others. Its analog in our
time—CFS (myalgic encephalomyelitis or ME in Britain)—is also medi-
cally elusive and has dozens of symptoms. Both disorders are surrounded
with evocative publicity that itself serves as a vector of transmission, and
in both cases one symptom seems to entail others as if the disorder were
simultaneously taking shape and defying comprehension. Similarly, with
disorders now officially defined in DSM as collections of symptoms, the
symptoms of popular disorders may suggest others on the same list by
association. Precisely because they are designed to leave nothing out, such
checklists build in this possibility of metastasis.

Laboratory and Marketplace

Most of the papers cited in the course of this study report directly or indi-
rectly on carefully designed trials. How can one draw conclusions about
the stretching of medical boundaries in the world at large from studies
THE ILLS OF HEALTH 63

whose methods are designed to control conditions in a way that can’t be


done in a natural setting, studies that may not claim to have any broad
application? There are a few answers to this question.
In one case to be discussed later, a psychological study presumes that
subjects will go along with screening for a trivial condition.110 Because
the designers wanted to manipulate subjects without feeding them false
readings of actual risk factors like blood pressure, they invented a spurious
enzyme deficiency of negligible significance and analyzed the behavior of
subjects who were “tested” for it and told they either did or didn’t have it.
Inasmuch as the designers were interested in factors that play into esti-
mates of medical seriousness, the study couldn’t have taken place unless
the subjects were prepared to take the exercise itself seriously, and this they
couldn’t have done unless the idea of a screening test of the most trivial
significance was credible to them. While not intended as a comment on
overbroad medical definitions and boundaries, the study dramatizes these
excesses and plays all but explicitly on conventions of medical awareness.
Like this study, a number of others to be discussed in due course reveal
more than they intend to about the dynamics of medicalization.
Some studies establish a principle whose implications can’t be contained
within the confines of the study itself. Of this kind are many and varied
investigations of both the placebo and nocebo effect, all showing that we
tend to experience what we are led to expect. But if that’s so, then it follows,
whether or not the implication is drawn, that children caught up in the
epidemic of diagnosed ADHD can come to exhibit the effects expected of
ADHD.
An example of an experiment whose implications extend beyond the
laboratory is a small study where healthy subjects were given a placebo, told
it was an over-the-counter drug with side effects like anxiety and headache,
and when instructed to monitor their reactions closely, duly reported the
cued side effects at a higher rate than controls. (Experiments like this show
the placebo effect shading into its opposite, despite the relative neglect of
the latter in the medical literature.) Our sensations appear to depend to
some degree on the attention devoted to them, and as the authors of the
study state, “somatic focus can be manipulated.”111 Manipulation, however,
is a process with open-ended possibilities and applications. While labo-
ratory evidence indicates that “attention to a given sensation within the
context of . . . selective search instructions results in a perceptual change of
the sensation,”112 surely the same heightened perception of internal events
as a result of attention focused on them takes place in the world itself. A
persuasive case has been made, citing the same evidence, that people who
believe they’ve been exposed to toxic agents, but in fact haven’t, can inter-
pret normal sensations as ominous signals.113 Ads encouraging us to scan
64 THE NOCEBO EFFECT

ourselves for symptoms of a disorder could also bias our experience of our
own states, constituting as they do selective search instructions. If such ads,
which virtually target a weakness of our perceptual system, were unable
to boost the perception of symptoms, it seems unlikely that royal sums
would be wasted on making and airing them. Besides, laboratory manip-
ulations are more like commercial ones than might appear. In the small
study just referred to where subjects were tricked into thinking they were
taking an actual drug, the proceedings were given an air of verisimilitude
by theatrical touches like the taking of a medical history. Pharmaceutical
ads feign verisimilitude in their own way—using actors to play doctors,
for example—and in the notable case of antidepressants, inspire public
belief in medications trivially superior to placebo. The principle of balanc-
ing risks and benefits is itself jeopardized when consumers are exhorted
to search for and interpret signals of ambiguous disorders like depression,
and to seek medications whose therapeutic effects may be minimal but
whose side effects aren’t.
Beyond the specific content of an ad, the very nature of a publicity cam-
paign echoes the process by which common symptoms are magnified into
chronic distress. Symptom amplification is a repetitive, self-reinforcing
process, with patients sometimes being asked over and over again to rate
their pain—a process known to worsen it—and adaptations aggravating
the distress they were meant to relieve.114 Publicity campaigns, which are
nothing if not redundant, are also self-reinforcing. Building on themselves,
they are a sort of public version or vehicle of the dynamic of directed
attention. After all, medicalization takes place not just here or there but
across society in general, and therefore can’t occur without some means to
propagate its messages. Not only advertising, awareness drives, and medi-
cal trends (as potent as such sources are) but the uptake and echoing of all
these in the media, online, and in common speech provide the context of
“overwhelming information”115 that powers the medicalization of everyday
experience. Thus, in the process of symptom amplification by which ordi-
nary ills grow into CFS, a crucial element is the information or folklore in
general circulation about the syndrome. Patients with CFS may “expect,
from what they have read, that chronic pain could eventually arise as part
of the syndrome,”116 and arise it does. Or consider the following case.
Already with his share of aches and pains, Jones suffers a minor jolt in a
motor vehicle collision. True to the common belief in our part of the world
that collisions cause whiplash, he begins to experience neck pain and head-
ache, unaware that the symptoms of whiplash are all but indistinguishable
from ordinary background events and that minor collisions don’t beget
whiplash in countries where the concept of whiplash is unknown. Hyper-
vigilant,117 he finds to his dismay that his symptoms persist and decides to
THE ILLS OF HEALTH 65

do something about them. Like one who learns that what he thought of as
unrelated events are actually symptoms of a single disorder—symptoms
that seem to reinforce one another as a result—Jones’s neck pain and head-
ache are now mutually confirming. And just as those caught up in a case of
imaginary toxic exposure are likely to have definite beliefs about the cause
of toxicity, Jones knows the cause of his symptoms.
In a reversal of the usual procedure, he therefore brings a ready-made
diagnosis of whiplash to a doctor. The pain medications he receives cause
a certain dizziness, another sign of whiplash. Refraining from usual activi-
ties, he begins to record his symptoms, which become more stubborn the
more immobile he becomes and the more anxiously he follows them. In
fear of aggravating the injury he adopts awkward postures that make things
worse. He sees a lawyer, at which point his pain becomes truly chronic. In
another society the aftereffects of the collision might have cleared up in a
matter of days, but in this case the cocktail of implicit expectation, anxious
attention, maladaptation, drugs, and legal action works to produce more
harm than the original injury. Through it all, Jones’s symptoms have only
become “more intense, noxious, and worrisome.”118
As this example suggests, information that isn’t managed at all, but sim-
ply circulates in our cultural water system, is as capable of shaping our
experience as well-engineered advertising campaigns. The medicalization
of a normal condition has been achieved not when psychiatrists declare
it a disorder with a given constellation of symptoms, but when its exis-
tence as a disorder seems as intuitive to people at large as whiplash. In this
respect, the power of DSM diagnoses is perhaps best shown by their ability
to become part of our vernacular, which is also to say our way of thinking.

Open-Ended Possibilities

Our propensity to find the symptoms we’re looking for ought to be well
known to doctors, because they share it. The phenomenon of medical stu-
dents’ disease refers to the documented tradition among such students,
especially perhaps in their first year, of discerning in themselves the symp-
toms of studied diseases. “The reported symptoms are often common
ambiguous somatic symptoms which in other situations may be inter-
preted as normal bodily sensations,”119 but which in this charged setting
are heightened even as conflicting signals are ignored. Medical students’
disease refers not to a single malady but a capacity to pick up any malady
under study—at least its presumed symptoms. And precisely because they
are interpreted as evidence of disease, somatic signals that might other-
wise be registered as normal sensations, if registered at all, now arouse dis-
tress. (“Now I understand—I have heart disease!”) As reported in a study a
66 THE NOCEBO EFFECT

half century ago, the severity of distress associated with medical students’
disease “ranged from moderate concern to levels that were disruptive of
daily functioning.”120 Here then is a case in which common symptoms are
sharply heightened once attached to specific maladies.
In its ability to mimic all sorts of conditions using common symptoms
as its raw material, medical students’ disease points to the boundless pos-
sibilities of overinterpreting bodily states. Medicalization exploits those
possibilities in the general population. Medical students aren’t selected
for their suggestibility, after all; if these candidates for induction into the
supposed temple of mind-body dualism can discover in themselves all
manner of disturbing conditions in a state of health, so can everyone else.
Indeed, it’s said that medical students’ disease represents nothing more
than “a normal response to learning about new disease information.”121
It follows that the potential to experience the symptoms of imputed dis-
orders occurs broadly, and that anyone immersed in information about
diseases is subject to the possibility of distorted perceptions. “People tend
to look for additional symptoms to fit [diagnostic labels]. Thus, the per-
son who attributes his chest pain to a heart attack is more likely to notice
other sensations consistent with heart disease.”122 By the same token, if
diagnosed with depression mistakenly, I can still pick up confirming evi-
dence of depression, all the more if I learn that an everyday problem like
sleep trouble is a symptom.
If nonspecific ills are part of normality and the process of construing
them as of medical import is itself a common one, then multitudes are
capable of being swept up in the process of medicalization at any time.
Medicalization after all implies not just the professional interpretation of
normal variations as medical problems, but the uptake of this practice by
the public. Thus, like medical students, members of the general population
can and do pick up thematic diseases or disorders by interpreting signals
that might not otherwise pass the threshold of awareness. The reports sur-
rounding such conditions, and giving them currency, act like the informa-
tion on which medical students model their symptoms.
But while medical students presumably outgrow medical students’
disease, others may grow into their disorder, reinforcing it by the atten-
tion devoted to it and the adjustments made in its name. Is the distress
resulting from the magnification of ordinary ills nothing but an optical
illusion? If that were so, there would be no reason to caution the authors
of consent forms about the risk of enumerated side effects springing to life
in the minds and bodies of subjects in clinical trials. Among the reactions
induced by consent procedures is nausea.123 It would be a mockery to tell
people their nausea is imaginary. Doctors, too, see many patients whose
distress is to some degree self-authored but no less distressing for that.
THE ILLS OF HEALTH 67

If people with the ills common in a healthy population are to seek treat-
ment, their problems must somehow be elevated to a higher category, and
the evidence suggests this is very possible. The theme of awareness, sug-
gesting as it does something entirely free of bias—something as pure as
the flame of consciousness itself—serves as an ideal cover for this kind of
inflationary operation. Or consider the propagation of “functional somatic
syndromes” (FSS’s) such as IBS, in which common symptoms are inter-
preted as markers of abnormality. Often these ailments are denied the
imprimatur of medical legitimacy, and the patients who claim them are left
to seek relief for a condition without a known treatment. It’s otherwise in
the case of ills like depression or anxiety, which in one shade or another are
also prevalent in the population (and feed into the FSS’s),124 but are autho-
rized by medicine and said to be treatable with a pill. Where the FSS’s are
engulfed in a polemical folklore portraying these conditions as disabling,
the publicity depicting depression and anxiety as potentially catastrophic
and disabling emanates from accredited sources, including the drug indus-
try and its surrogates, and may be all the more influential for that reason.
By casting common problems as medical disorders and surrounding them
with exaggeration (including the use of “Major Depression” as the official
title of a condition that often abates without treatment), the promoters of
medicalization virtually model the process of magnifying symptoms.

Proof of Principle

A striking demonstration of the effect of medicalizing normal conditions


is the loss of well-being suffered as a result of positive findings that prove
unfounded. We might suppose that a patient who received a disturbing
report following a screening test, only to have it cleared up by further test-
ing, would be reassured. Medicine itself seems to support this notion, pre-
suming as it does “that it is more serious to miss a disease by carelessness,
ignorance, or accident, than to temporarily diagnose one.”125 But what if
the temporary diagnosis lingers? In some cases, “once the seeds of doubt
have been sown they seem to be difficult to remove.” Patients who learned
they had high blood pressure but proved normal after three additional tests
reported poorer health and more symptoms of depression than compara-
tors who tested normal from the beginning. Parents of infants wrongly diag-
nosed with a disorder experienced corrosive worry even after the diagnosis
was revoked.126 Women with abnormal mammograms suffered lingering
worry even after their workups ruled out breast cancer.127 For some patients
a diagnosis is like a poisoned dart whose toxin remains after the dart has
been removed. A group of patients originally diagnosed with angina (but
with normal arteriograms) had their diagnosis officially retracted when their
68 THE NOCEBO EFFECT

pain was traced to other sources. “In each of the 55 patients the absence of
any cardiac abnormality and the positive non-cardiac diagnosis of the chest
pain [were] communicated clearly to the patient and to his or her relatives
and to the general practitioner, with a conscious attempt to reassure them
about its benign prognosis.” Nevertheless, almost all the patients continued
to believe they suffered from chest pain, and most believed that too much
exertion was dangerous for them. “It is clear . . . that it is difficult to rescind
a diagnosis of angina once it has been made.”128
What of psychiatric misdiagnosis? Is it possible that a normal person
diagnosed for some reason with a mental disorder could come to believe
he or she really had it? Under suitably oppressive conditions, it might be
hard not to believe it. Thus, during the Chinese Cultural Revolution many
of those detained on ostensibly psychiatric, actually political charges seem
to have found themselves succumbing to the fictions they were accused
of. “The police pressure on those arrested for alleged political offenses
was often so great that many people began to believe that they actually
had committed ‘towering crimes against the people’ . . . and in the course
of their daily forced-confession writing sessions in prison, they began to
reinterpret large sections of their own pasts in lurid and entirely fabulous
terms.”129 But can people buy into false diagnoses without police power
bearing down on them, merely as a result of the prestige, social currency,
and intuitive appeal of medical labels?
Earlier we met “Adam,” diagnosed with bipolar disorder at the age of 12,
at a time when the diagnosis had acquired a kind of sweeping popularity
both inside and outside the halls of psychiatry. Even while he recognized
that the label didn’t fit his case, Adam came to believe it in some core way.
Precisely because an inflated or merely trendy diagnosis can take root in a
patient despite its weak basis, some psychiatrists have made it their work to
“undiagnose.”130 The American Psychiatric Association itself undiagnosed
an entire population as part of the same reform movement that eventually
led to DSM-III. The group was homosexuals. And much as retracted medi-
cal diagnoses can live on in the minds and bodies of patients, the damage
done by the classification of homosexuality as a mental disorder was not
easy to undo even after the APA’s official revocation of the diagnosis.
In accordance with prevailing psychiatric opinion, homosexuality was
listed as a mental disorder in the 1952 edition of the DSM, a definition that
remained in place until rescinded in 1973. The delisting of homosexuality
had the unintended effect of leaving homosexuals who happened to be in
treatment without a reimbursable condition.131 Why were they in treatment?
To claim they now suffered from “ego-dystonic homosexuality”—a successor
disorder arising not from their own pathology but hostility toward homo-
sexuality in the world around them—is equivalent to saying they suffered
from the antagonism codified in the original APA diagnosis. The diagnosis
THE ILLS OF HEALTH 69

was clearly iatrogenic. If the expectation of sickness can cause just that,132
so can exposure to the medically authorized message that you’re sick con-
vince you that sick you are. It’s said that “the gay population’s insistence that
homosexuality be removed from DSM-II is an illustration of the enormous
authority and significance given to the APA’s diagnostic system.”133
We have every reason to believe that a system so powerful—a system,
moreover, that now reaches more deeply into everyday life than in the
1970s—can convince us that we’re suffering from depression, PTSD, or
some other disorder, all the more if the diagnosis is in favor and its symp-
toms blend into normality. After all, our ailments don’t identify themselves
to us; we learn to identify them. Not that long ago, patients didn’t recognize
as “depression” symptoms like those aggregated in DSM. Said an English
GP in 1972,

There has to be a first time when the patient has not been conditioned to
say “I am depressed, doctor.” This is a “doctor phrase” rather than a “patient
phrase” and results from the constant reiterated question, “do you feel
depressed?” The new patient will present with one or more of a great variety
of physical and mental symptoms.134

In that mix of symptoms are sure to be some common ones. Thus, high on
the list of common symptoms published in 1968, before the popularization
of depression, are a number deemed indicators of depression from DSM-III
(1980) to the present. While the questionnaire the list was based on didn’t
ask about depression or its then more popular sibling anxiety, “irritability”
scored almost as high as “excessive sleepiness” and “fatigue,” both now sig-
nifiers of depression. (Also as reported in 1968, a community survey found
“irritability” clustered with mild depression, insomnia, and “nerves” in as
much as 30 percent of the population.)135 Maybe the irritable were patients
who hadn’t yet learned to say, “I am depressed.” But to acquire that practice
is to do more than engage in a form of words. That people told suggestively
enough that they show signs of depression can come to think of themselves
as depressed is shown by the great numbers—far more than ever before—
now treated for the disorder. Common symptoms collected under a label at
once authoritative and connotative can assume a new power.
Many would argue that people still need to be taught to say, “I am
depressed.” Robert Spitzer and coauthor propose the following case of a
patient who may be depressed with knowing it:

An individual who has marked loss of interest and pleasure (not depressed
mood) with five of the nine symptoms [of depression] (e.g., hypersomnia,
weight gain) present to a marked degree nearly every day for 2 weeks might
be neither significantly distressed nor role-impaired. Such an individual may
still have a depressive disorder.136
70 THE NOCEBO EFFECT

As if every word of the DSM were to be taken scripturally, a person who


meets the depression criteria may have to learn to think of herself as
depressed even if she isn’t significantly distressed and performs her work
as well as before—in short, even if she’s none the worse for her disorder.
Homosexuality was delisted as a disorder at the urging of an organized
group that took offense at being typed as mentally ill, with Spitzer mediat-
ing the removal of the diagnosis from the DSM. By contrast, the definition
of common problems as mental illnesses in DSM-III offended few—
certainly not an organized group—and it was some years before a strong
critique of the medicalization of sadness was put forward. Unlike the typing
of homosexuality as a mental disorder, the diagnosis of Major Depression
was framed by the rhetoric of benevolence. No doubt it’s because opposing
benevolence is hard labor that successive editions have been able to extend
the DSM’s writ deep into the territory of normality.
3

Searching for Signs

Red Flags

When introducing consumers to the idea that they might have a medi-
cal problem, the agents of medicalization like to say they’re promoting
awareness. What is it about the word “awareness” that recommends it? In
that being aware seems better than not being aware, the word is definitely
loaded. In liberation rhetoric, the oppressed who think of themselves as
oppressed—who have achieved awareness—are more politically advanced
and more capable of action than those at a lower stage of consciousness.
Arguably, the trope of coming-to-awareness would apply best to a case
where someone who doesn’t perceive a looming danger comes to appreci-
ate that it exists: registers the red flags. Rarely, though, does danger present
itself with the clarity demanded by this scenario.
Soon after Maj. Nidal Malik Hasan shot to death 13 and injured many
more at Fort Hood, Texas, on Nov. 5, 2009, reporters and commentators
began to wonder aloud whether warning signs of the homicidal outburst
had been ignored. “Officials may not have heeded warning signs,” declared
a headline in the Washington Post of Nov. 7. According to an article in
the New York Times on Nov. 9, the FBI and the Army may be guilty of
“missing possible warning signs that might have stopped a mass killing.”
Whether or not such a massacre was predictable, the retrospective invoca-
tion of warning signs seems to take place regularly—predictably—in the
aftermath of mass murder. Within a day of the massacre at Virginia Tech
in April 2007, CBS News already had an article on its website headlined,
“Warning Signs from Student Gunman.” Appended to the report of the
Virginia Tech Review Panel, likewise, is a list of “red flags, warning signs
and indicators.” It’s as if the ritual repetition of phrases served to soften the
shock of events. However, the notion that such atrocities are preceded by
legible warnings, and could therefore have been prevented if only the cues
72 THE NOCEBO EFFECT

were properly heeded, obscures the reality that it’s easier to predict events
after they occur.
Regardless of the language that sprang up seemingly automatically in the
press in the immediate aftermath of Fort Hood, those events, too, yielded
warning signs only in retrospect. After the fact it came out that Hasan was
known to be in communication with an anti-American cleric in Yemen,
yet “there was no indication that Major Hasan was planning an imminent
attack.”1 The ominous import his exchanges with the cleric seemed to pos-
sess in the light of later events escaped intelligence analysts in real time.
Even those who think Hasan’s actions might have been prevented would
have been reluctant at the time to charge him with conspiracy to commit
mass murder on the strength of messages that gave no evidence of any such
thing.
A number of diagnoses proposed for inclusion in DSM-V, such as
“psychotic risk syndrome,” were inspired by the dream of preventing a
catastrophe by reading its signs in advance. The trouble with the inher-
ently attractive idea of a warning sign lies, in part, in the concept of
advance notice of an impending disaster. (The word “disaster” itself, liter-
ally meaning an “ill-starred” event, has traces of astrology.) Compound-
ing the uncertainty of behavioral signals as such with reference to an
as-yet nonexistent event, such a sign seems doubly uncertain. By defini-
tion, we can easily miss the import of an ambiguous signal directing our
gaze to something that hasn’t yet taken place. However, it’s also easy to
make something of nothing—to convert a datum into a warning sign by
reading into it ominous import it doesn’t possess or warrant. The notion
of a warning sign is rife with false positives. In point of fact, “there are
no accurate methods of discriminating those who will go on to develop a
bona fide mental disorder from those who do not,”2 the use of retrospec-
tive judgment to make it appear that “I knew it would happen all along” is
a patent example of recall bias, and psychological experts have a notably
poor prediction record.3 In an amicus brief filed in a capital case some 30
years ago, the APA itself declared that “even under the best of conditions,
psychiatric predictions of future dangerousness are wrong in at least two
out of every three cases.”4
Say a youth who turns a gun on his fellow students is discovered to
have liked a song that celebrates killing. In retrospect the association
seems highly significant, though in real time no one may have read any-
thing into it (after all, millions of others also liked it), and in any case
it would have been impossible to predict so terrible an outcome on the
strength of such slender evidence, even supported by other evidence of
the same kind. Was his liking for the song a sign? Why didn’t anyone rec-
ognize it as one? How, on the basis of evidence as tenuous as this, would it
SEARCHING FOR SIGNS 73

be possible to justify the sort of preemptive intervention that believers in


warning signs seem to have in mind? If screening the male population for
signs of prostate cancer leads inexorably to overdiagnosis and overtreat-
ment, we can only imagine the error-potential of a program to screen the
youth population for the still more misleading signs of the violence said
to be a sort of cancer in society.
In any event, the proposed diagnosis of “psychotic risk syndrome”
didn’t make it into the final text of DSM-V, probably because no known
warning signs of future psychosis exist. The very proposal to treat chil-
dren with powerful drugs to arrest their progress toward schizophrenia,
when no one knows how to identify schizophrenia in its early stages,
therefore defies risk/benefit calculation. Only if we already knew that
someone was destined for schizophrenia would the ambiguous indicator
we call a warning sign mean anything (though in that case, of course,
we wouldn’t need to be warned). So too, inconclusive behavioral data
such as liking a song or even corresponding with an enemy look different
when viewed retrospectively in the light of a defining event. What may
not have stood out at the time now confronts us as a precursor of an act
of violence.
I propose that directions to search ourselves for predefined signs of
something wrong can have a similar heightening effect, especially if the
signs are ordinary. Much as a tendentious interpretation of a favorite song
transforms it into an omen, a ready-made interpretation of a somatic or
psychological signal can sharpen it and amplify its import. Once DSM-IV
opened up a less demanding category of bipolar disorder that was duly
exploited by the drug industry, any sign of mood irregularity could be
taken to indicate a presumptive “tendency toward bipolar disease.”5 Con-
sidering the universality of the indicators and the softness of the concept of
a “tendency,” it’s surprising that diagnoses of adult bipolar disorder merely
doubled.
As reported recently in the psychiatric literature, two British adults
were diagnosed with bipolar disorder, one of whom actually sought out
the diagnosis in the belief that it was a boon, while the other “appeared less
informed [sic] and was reluctant to consider the diagnosis as a reality.” The
patients were then asked to keep a mood diary for six months in order to
verify the diagnosis, and both duly produced “mood diaries that fit with
bipolar II disorder.”6 Note that the psychiatrists didn’t refrain from diagno-
sis until the evidence of the diaries was in hand but, on the contrary, gave
the patients a diagnosis that could easily have shaped the report of their
symptoms. As a result of the human tendency to find the signs we’re cued
to find, the second patient could have been won over to a diagnosis she was
originally loath to accept.
74 THE NOCEBO EFFECT

Guided Self-Examination

A provocative study of psychotherapy poses an analogy between a psy-


chiatrist and a witchdoctor, both of whom relieve distress by identifying its
source. The psychiatrist, gazing intently at the client, says,
“You looked angry when you were talking about your father . . . I wonder
if something happened to you once that made you very angry at him.” At
this point the client broke down sobbing, blurting out a forgotten history of
neglect and deceit by a thoughtless father toward a little girl. Afterward the
client felt better. After several more sessions in which she was able to explore
her feelings of anger, she began to get better.

It’s as if a spell had been broken. However, the witchdoctor too lifts a spell
of suffering, telling a sick man he violated a family taboo and prescribing
the sacrifices necessary for restitution. In both cases recovery is speedy for
the simple reason that both therapists identify the cause of the illness, and
“the very act of naming has a therapeutic effect.” Such is “the magic of the
right word.”7
Whether or not words are magical, everything about the vignette of the
psychiatrist is a little too perfect to be true. No sooner are certain formulaic
phrases spoken than a patient locked into a history of suffering she barely
understood begins to see daylight. It seems strange that the client’s his-
tory, though forgotten, comes out instantly, fully formed, the moment it’s
called for. Could it be that the client has been cued by the therapist to bring
forth a particular kind of story about her father? If you bear in mind that
memories are subject to the power of suggestion8 and that psychotherapy is
highly conducive to suggestion,9 the skit certainly reads differently. Suspect
too is the very neatness—the psychological precision—of the causal mech-
anism said to lie behind the patient’s problems. Concerning “cause-and-
effect stories” told in the course of psychotherapy, David Jopling observes
in a probing study, “What clients take to be deep and accurate insights into
their psychology and behavior may really be stock psychodynamic causal
generalizations and confabulations they have learned during therapy.”10 In
the case of the angry-looking client, the magic of the therapeutic word may
lie not in any curative power but the ability to summon up a story so con-
ventional that it inspires the person who fashions it to believe it.
What if a diagnostic label is applied not to a single patient come in search
of it but millions of potential patients at once, all of whom are advised to
scan themselves for signs of the condition in question? In 1979, on the eve
of DSM-III, Christopher Lasch noted with a prophet’s eye that “medicine
and psychiatry . . . reinforce the pattern created by other cultural influences,
in which the individual endlessly examines himself for signs of aging and
SEARCHING FOR SIGNS 75

ill health, for tell-tale symptoms of psychic stress.”11 Such anxious search-
ing is not only a folly but a trap, in that looking for evidence of trouble
means trouble is going to be found; you need only interpret ambiguous
indicators in the light of what you’re looking for. By the same token, medi-
cal and psychiatric labels with enough suggestive power can elicit confirm-
ing signs much as a therapeutic convention can elicit a confirming story.
“Research on selective monitoring has shown that providing persons with
a diagnosis can guide interpretation of sensations by setting up expecta-
tions regarding what symptoms they should be experiencing.”12 Especially
in a climate of emotive publicity, merely providing patients with the label,
TBI (Traumatic Brain Injury), can aggravate symptoms and degrade cog-
nitive performance.13 Once Mrs. B, a patient mentioned in Chapter 1, was
diagnosed with lice, she started making suppositions about the source of
the infestation, scratched herself bloody, and even quarantined herself for
fear of infecting others, even though, as it turned out, she had no parasite
at all.14
Advertising and awareness campaigns urging members of the gen-
eral public to scan for signs of this or that disorder constitute primers in
misinterpretation and are especially suggestive when the featured disor-
der is a public theme (like depression or bipolar disorder in recent years)
and broadly overlaps normality. Once the hitherto obscure diagnosis of
Asperger’s syndrome acquired a kind of celebrity, people began to notice
the signs of Asperger’s in themselves. They did so all the more readily in
that the diagnostic markers are commonplace and the syndrome acquired
a paradoxical cachet. A popular self-administered quiz for Asperger’s syn-
drome asks you to agree or disagree with such innocuous propositions as
the following:

I would rather go to a library than to a party.


I would rather go to the theater than to a museum.
I don’t usually notice small changes in a situation or a person’s appearance.
New situations make me anxious.
I don’t particularly enjoy reading fiction.

Given (again) the triviality of the indicators, it’s no wonder that Asperger’s
is on the rise, to the point that this once-esoteric term has something like
the popular currency of a brand name.
The process of detecting or overdetecting cued symptoms takes diverse
forms. Under the influence of expectation a depressed person can inter-
pret a mood variation as a confirming symptom, a finding depressing in
itself.15 Yet noticing certain adverse signs or signals that have been flagged
for attention is a normal process of wide occurrence. Many side effects of
76 THE NOCEBO EFFECT

prescribed drugs—by some estimates, as high as 89 percent16—and virtu-


ally all side effects of placebos arise not from any known component of the
pills themselves but the power of suggestion and expectation, which doesn’t
mean such effects are trivial; they can induce distress and even noncompli-
ance. Besides, it’s one thing to experience everyday ills and discontents and
another to identify them as signs of a disorder, just as common symptoms
that ordinarily might not even be registered can take on distressing import
once picked up by medical students’ disease. To encourage consumers to
look for signs that something may be wrong with them is to toy with a
process that can distort their very experience.
“Do you see yonder cloud that’s almost in shape of a camel?” asks Ham-
let. Says Polonius, “By th’mass, and ’tis like a camel indeed.” Some of our
symptoms are themselves cloudy, and when cued to look for them we tend
to find them. Thus, in one study healthy volunteers instructed to pay atten-
tion to sensations of “nasal stuffiness and congestion” reported such events
at a higher rate than those told to attend to the sensation of breathing
freely, regardless of the actual degree of congestion.17 So too, in a multi-
center trial of treatments for angina pectoris in which some consent forms
happened to list the possibility of gastrointestinal distress and some didn’t,
alerted subjects reported the side effect in question at a much higher rate.
“More than six times as many patients discontinued aspirin/placebo treat-
ment because of gastrointestinal symptoms in the centers in which gastro-
intestinal side effects were mentioned in the consent form.”18 The cue to
direct their attention to their own viscera led the subjects, many of whom
had actually taken placebo, to experience the specified distress. Some level
of distress might have been there all along, only to be summoned to aware-
ness and intensified by the advisory language of the consent form.
Without knowing what we’re looking for or what to call it when we find
it, we might get lost amid a profusion of signals—the items on symptom
lists can run to the dozens—and might not even know what to make of the
obscurity of some of our own sensations. “Schemas”—guides—“serve to
organize sensory information and to direct search for additional informa-
tion.” By the same token, however, “The entire process of schema-guided
search is prone to certain biases and distortion in perception . . . We tend
to weight schema-consistent information more heavily than when infor-
mation is inconsistent.”19 Just as response to suggestions didn’t enter the
world with the randomized clinical trial (RCT), so the principle that cues
guide interpretation of our own states applies well beyond the confines of
the RCT. A diagnostic system with the prestige of medicine behind it, but
which has seeped into common speech, constitutes a powerful schema
capable of both guiding and distorting the interpretation of experience.
The amorphousness of common symptoms (which after all aren’t obligated
SEARCHING FOR SIGNS 77

to conform with the diagnostic conventions of the day) coupled with our
perceptual biases helps explain why it is that patients and doctors alike see
clear evidence of anxiety when anxiety is in favor, depression when depres-
sion is in favor, attention deficits as soon as they become diagnostically
popular, and all the rest.
The case of the woman inspired by the magic of the right word has been
cited as an example of the placebo effect in action,20 and some say the act
of diagnosis in and of itself possesses a similar therapeutic magic. Outside
the clinic (and even inside, though that matter will be taken up later) the
message that there just might be something wrong with you, the message
of medicalization, may not be so benign. Given that the process of guided
search is “prone to certain biases and distortion in perception”—all the
more, you would think, when the search is an anxious one—it can read-
ily elicit magnified sensations and ready-made interpretations. Just as
placebos can “redirect attention” from pain (which is an argument against
using them to determine whether or not pain exists),21 so, conversely, can
focusing attention on symptoms exacerbate the symptoms themselves.22
Considering, then, that in a state of good health we can and do experience
varying symptoms and ambiguous ills and discontents, and that height-
ened attention to these events can heighten their intensity, considering in
addition that interpreting a symptom as evidence of a disorder or disease
can sharpen it, it follows that the trend toward medicalization can result in
keener symptoms and a keener sense of being unwell. Everything known
about placebo and nocebo effects favors this possibility.
An example of a particularly anxious guided search will illustrate the
possibility of overreading somatic signs.
A randomized trial of breast self-examination (BSE) involving over a
quarter million Chinese women found a marked increase in biopsy rates
but no decrease in breast-cancer mortality over 11 years, suggesting that
BSE resulted in the overdetection of suspicious tissue.23 Anxious atten-
tion makes for the misinterpretation of signs. And attention is all the more
likely to be anxious if the woman performing BSE can’t really be sure she
hasn’t missed something, like an American woman who said,

It’s a no-win situation. I don’t feel reassured after doing [BSE], mainly
because I’m never really sure that I didn’t find anything. It’s funny; I’m pretty
sure I would find a lump if I had one, but I’m not really sure about finding
nothing.24

In the privacy of this woman’s experience the diagnostic maxim that a false
negative is worse than a false positive seems to have been transmuted into
a painful bind.
78 THE NOCEBO EFFECT

Now assume that women urged to perform BSE have been thoroughly
exposed to the sort of campaign in favor of mammography waged in
Europe and the United States in the name of breast-cancer awareness.
Whereas mammography appears to spare approximately one breast-cancer
death per thousand women screened (albeit without reducing overall mor-
tality), a study in 2009 found that over 90 percent of respondents in Europe
overestimated the figure by at least a factor of ten. In France, the Nether-
lands, and the United Kingdom, over 40 percent of respondents believed
the reduction of mortality to be 100 or 200 per thousand screened. In the
UK, over 25 percent of respondents exaggerated the mortality benefit by a
factor of 200.25 Such conditions would strongly favor the overdetection of
concerning signs through BSE. Also in 2009, the US Preventive Services
Task Force concluded that the harms of BSE exceeded the benefits. While
breast cancer is a special case owing to its potential lethality, its uniquely
emotive valence, and the ambiguous value of preventive efforts, the risks of
searching oneself for signs of highly publicized conditions apply elsewhere
as well.

Amplification and the Marketplace

The processes required to heighten symptoms aren’t restricted to this or


that category of patient. While the anxious, the depressed, and those given
to somatizing are all said to share a tendency to misconstrue benign bodily
sensations, virtually anyone can do this, as suggested by the high rates
of nonspecific side effects associated with drugs. To complicate matters,
the estimated prevalence of depression and anxiety has shot up in recent
decades, so that (leaving depression aside) perhaps over 10 percent of the
population is now deemed to suffer from social anxiety alone, while in
the 1980s the SAD population was estimated at a mere 1–2 percent.26 Evi-
dently the very categories of anxiety and depression have inflation built
into them, which isn’t to say that those who don’t really belong there are
spared the tendency toward misinterpretation common in those who do.
Members of the general population labeled with one of these disturbing
conditions as a result of diagnostic activism could begin to read the signals
of their minds and bodies differently under the influence of “iatrogenic
misapprehension,”27 all the more if treated with psychoactive drugs. After
all, a hunt for symptoms can feed a vicious cycle, whereby the symptoms
incite more anxiety as a result of the anxiety with which they are viewed28
(and in the case of SAD, the symptoms are indicators of anxiety to begin
with). All interpretation is of course subject to partiality and distortion, but
especially the interpretation of our own ills, just because they’re our own.
A strong case has been made that the seeming efficacy of antidepressants
SEARCHING FOR SIGNS 79

results from a sort of trick of introspection, a reading error whereby the


side effects of the drugs (ranging from sexual ills to sweating) convince the
taker they actually work. There’s good reason why the popularization of
a new disorder often begins with diagnostic quizzes asking consumers to
look into themselves. Precisely by posing leading questions, these exercises
suggest their own answers and set in motion the misreading of internal
signals. It’s interesting that drug companies are able to keep reported side
effects in clinical trials to a minimum by not presenting subjects with the
sort of suggestive questions used to expand markets.29
Medicalization expands the market for clinical goods and services
by playing on a tendency to make much of our ills that is potentially as
broad as the market itself. After all, we need not manufacture symptoms
in order to become in some sense unwell, but merely bring them forward
into salience from the deep pool of ambiguous ills that feeds into our daily
experience. And what’s true of somatic symptoms is certainly no less true
of psychological ones, which are also deeply embedded in our experience
and tend of their nature toward indeterminacy. Both obscure sources of
distress and innocuous problems can be magnified, especially in an atmo-
sphere of exaggeration.

Distressing symptoms are omnipresent in daily life . . . Under the influence
of medical scrutiny, public health concern, and media attention, a process
of symptom amplification that alters the perception of these endemic symp-
toms can be set in motion . . . The assumption that one is seriously ill also
heightens self-scrutiny and prompts a confirmatory search for other symp-
toms to corroborate one’s suspicions. Ambiguous sensations that were previ-
ously ignored, dismissed as innocuous, or never consciously noticed are now
interpreted as further evidence of the presence of the suspected disease.30

Medical scrutiny, public health concern, and media attention all drive med-
icalization. Without the first, normal ills couldn’t be framed and treated as
medical issues; without the second, medicine couldn’t go out into the com-
munity to foment awareness—it would have to wait for the community to
walk in the door; without the third, the message of concern couldn’t be
broadcast to the world. But to say that a certain process of distortion alters
the perception of a symptom is to say it alters the symptom, for a symptom
is as perceived. If medicalization triggers the magnification of a symptom,
it does not, therefore, do something to the interpretation of the symptom
while leaving the thing itself untouched.
We may have good reason for not paying too much attention to every-
day ills. A study conducted in London a few years ago found that while
38 percent of women reported indications of one or another sexual
dysfunction—a figure that gives dysfunction itself a kind of ambiguous
80 THE NOCEBO EFFECT

normality—only 18 percent perceived it as a problem, and only 6 percent


as a distressing problem.31 (It should also be noted that of the 510 women
asked to participate in this study, 109 [21 percent] refused.) Perhaps the
women didn’t rate their symptoms as distressing because the symptoms
didn’t represent to them the real problem; most suggested that “difficulties
with their partner lay at the base of their problem.” And so the very act of
foregrounding the symptoms of sexual dysfunction as objects of clinical
attention could give them a status they don’t have in the eyes of the patient.
Though implicitly critical of efforts to inflate the rate of sexual disorders
and to cast sexual problems as disorders, the same study demonstrates how
fishing for data can generate numbers that mean less than they appear to.
In this case, a sampling of women waiting to see their GP were asked to fill
out a form investigating their sexual habits, and those who agreed found
themselves confronted with questions like the following:

During the past month, how frequently have you experienced the following?
(An answer is required for each, even if it may not apply to you.)
Sexual interest (0) Not applicable
Sexual arousal (1) Much lower level
Sexual activity (2) Somewhat lower level
Sexual satisfaction (3) No change
Sexual anxiety (4) Somewhat higher level
(5) Much higher level

Such a fine-meshed net is bound to catch something, whether or not it’s


information the respondents would have reported without prompting (in
this case nothing suggests that any of the women were seeing the doctor
with a sexual complaint), and whether or not they themselves attach sig-
nificance to the findings. Notably, the ready-made questionnaire adminis-
tered to the women didn’t ask them whether they think they have a sexual
problem, and if so, how serious; those inquiries were added by the study’s
authors. Despite reporting this or that symptom under the intensive grill-
ing of the questionnaire, it turned out that few women were troubled by the
symptom. Thus, the questionnaire suggests how data pointing to a medical
problem can be teased or pried out of people who don’t even consider it a
matter of concern. Parties interested in inflating the prevalence of female
sexual disorders or expanding the market for potential treatments would
know exactly what lessons to draw from this exercise.
Now suppose a drug manufacturer is working on a pill to treat one or
another symptom of female sexual dysfunction. Women like the study sub-
jects become, in its thinking, candidates for signal amplification. If only
women paid more anxious attention to sexual problems they discount
SEARCHING FOR SIGNS 81

as insignificant or secondary, a vast market could be opened up. Lest we


assume a pill could go nowhere with consumers who think the problem
actually lies in their circumstances, drugs that have put their stamp on the
era of medicalization—antidepressants—overcame similar market condi-
tions. Multitudes of people learned to think of themselves as suffering from
a mental disorder, regardless of the circumstantial nature of their distress
(and despite the “stigma of mental illness” ritually deplored in the medical
literature). Bear in mind, too, that while many of the women in the dys-
function study had a problem they didn’t see as a problem, Robert Spitzer
took the position while DSM-III was under construction that “both for
scientific and political reasons we [psychiatrists] are in a very bad position
if we claim that lack of sexual pleasure of any kind is only a mental disor-
der when accompanied by distress.”32 More recently, Spitzer and a coau-
thor argued that men with even intermittent erectile dysfunction have a
disorder—a mental disorder—whether or not they are bothered by it. “We
would argue that this condition is a disorder even if the individual is not
distressed by it and it causes no interpersonal difficulty.”33
In an effort to amplify both the signal and the market, ads for antide-
pressants encourage consumers “to monitor themselves .  .  . for signs of
sadness and to interpret these common signs according to the worrisome
meanings derived from expansive definitions of depressive disorder”34—
research having shown that scanning for signs with predetermined mean-
ings will increase the perception of those signs. Such introspection doesn’t
merely pick up what’s there; it heightens what’s there by attaching a trou-
bling significance to it, just as a certain mode of self-monitoring can con-
vince people they’ve been exposed to toxic agents even when no exposure
has taken place. In and of itself, the act of imposing a medical definition
(“depression”) on conditions that are unspecific and nonpathological
(“sadness”) changes the game. It’s like shining a spotlight in a dark place—
or freezing the stream of consciousness.

Anxiogenic Ads

Our predisposition to find what we’re cued to look for is borne out in stud-
ies where subjects are asked to rate the accuracy of allegedly specific, but
actually completely generic, descriptions of their own personality. Often, it
seems, such spurious generalities are accepted as valid descriptors. A study
in 1949 served up the following personality sketch, loaded with vacuous
particulars, to each of 39 subjects:

1. You have a great need for other people to like and admire you.
2. You have a tendency to be critical of yourself.
82 THE NOCEBO EFFECT

3. You have a great deal of unused capacity which you have not turned
to your advantage.
4. While you have some personality weaknesses, you are generally able
to compensate for them.
5. Your sexual adjustment has presented problems for you.
6. Disciplined and self-controlled outside, you tend to be worrisome
and insecure inside.
7. At times you have serious doubts as to whether you have made the
right decision or done the right thing.
8. You prefer a certain amount of change and variety and become dis-
satisfied when hemmed in by restrictions and limitations.
9. You pride yourself as an independent thinker and do not accept
others’ statements without independent proof.
10. You have found it unwise to be too frank in revealing yourself to
others.
11. At times you are extroverted, affable, sociable, while at other times
you are introverted, wary, reserved.
12. Some of your aspirations tend to be pretty unrealistic.
13. Security is one of your major goals in life.

Most of these incisive observations were actually taken from horoscopes.35


Considering that the listed traits apply to almost anyone, it comes as no
shock that practically all the subjects (college students in this case) thought
they applied to them specifically. But note the hints of social anxiety in the
generic personality sketch. “You have a great need for other people to like
and admire you,” implying a corresponding dread of their censure and ridi-
cule. “You tend to be worrisome and insecure inside.” “You have found it to
be unwise to be too frank in revealing yourself to others,” which glances at the
cardinal SAD symptom, fear of exposure. “At times . . . you are introverted,
wary, reserved.” Haunted as you are by fear, “Security is one of your major
goals in life.” If it were possible to focus selectively on these traits and boost
their intensity somewhat, the result would be a profile of social anxiety.
Advertising specializes in just such heightenings and manipulations. Per-
haps, then, an ad can get you to think you have SAD.
In order to transform ordinary shyness or reserve into something
known as social anxiety disorder, not only did the authors of the DSM have
to define such an entity and establish it on paper, but the entity had to catch
on with medicine and the public. It couldn’t do so unless common traits
were promoted into something more troubling, and in this work advertis-
ing, whose first principle and favorite trope is exaggeration, proved indis-
pensable. Even as ads for Paxil ran in medical journals, ads for SAD itself
addressed the public at large—one of which showed a man sitting alone in
SEARCHING FOR SIGNS 83

what seems to be a restaurant, staring despondently into a teacup. “Imag-


ine being allergic to people,” reads the caption.
Though everything except the man and his place-setting is blurry, it’s
plain that others are together and he is alone, or alone with his anxiety.
“You blush, sweat, shake—even find it hard to breathe,” the text says, not
that the image actually depicts such terror. The message, then, is anxio-
genic in itself, planting the idea that if you do nothing about your disorder
it can advance to full-blown terror, and that while you may not recognize
the peril you’re in, a reader of the ad certainly can’t see the solitary diner
“finding it difficult to breathe” either. What could be more insidious—a
foreign substance in your tea? Thus the common trait of being “disciplined
and controlled outside” but “worrisome and insecure inside” is upgraded
to a paralyzing fear. Note too that in contrast to an allergy to a particular
thing, the sufferer from SAD is allergic to people, which is tantamount to
an allergy to the world at large. Though drug ads advise you to “see your
doctor,” no doctor would ever tell a patient, “Think of it this way—it’s like
you’re allergic to people,” if only because of the damage such a preposterous
message could cause.
What makes ads depicting the tribulations of a disorder like SAD all
the more potent is that they incite anxiety about anxiety, setting up one
more vicious cycle. Just as depression grows more severe as people become
depressed about being depressed36—indeed, the feeling of being locked
inside depression helps distinguish it from the transient sadness that
accompanies life’s variations—so anxiogenic ads for antianxiety medi-
cations show the condition as a state of desperate entrapment. As in the
case of the Allergic to People ad, social anxiety is like being shut in a state
of dread. A sci-fi-like ad for the drug Miltown, dating to 1960, decades
before prescription medications could be advertised to consumers, shows a
woman ensnared in a gigantic spider web, with the text telling you that the
drug is “for the patient who ‘sees no way out’ . . . the patient who is caught
in the intricate web of her own worries and problems.”37
The process of symptom amplification, by which normal ills are elevated
into medical issues, is well adapted to the marketing goal of converting
tens of millions of normal persons into patients suffering from a disorder,
and ads magnifying shyness into a state of clinical terror both fuel and act
out this transformation. In fact, horror scenarios like those in SAD ads
resemble models of symptom amplification; with their hyperbolic images
of being shut out of life and shut into fear, they suggest the end-product of a
process by which everyday symptoms become “more intense, noxious, and
worrisome” as a result of perceptual distortion.38
Critical to the process of amplification, as we know, is the act of fas-
tening anxious attention on symptoms. According to a seminal analysis of
84 THE NOCEBO EFFECT

the nocebo effect, “Awareness of or attention to nosological [that is, diag-


nostic] categories may lead to self-scrutiny and to self-diagnosis with the
considered sickness”39—which is exactly the effect the Allergic to People
ad is designed to have. But if the ad sells the dubious construct of social
anxiety, so too does it sell a fictitious notion of awareness as the guard-
ian of well-being. Just as “health is not something that is revealed through
investigation but rather as something that manifests itself precisely by vir-
tue of escaping our attention,”40 so the artificially heightened attention we
call awareness—and the Allergic to People ad was part of an awareness
campaign—actually promotes not health but illness.

Cued Sensations

In all of us is a fund of ambiguous somatic ills as well as amorphous anxiet-


ies and other troubling signals, all of which can be given definition by med-
ical labels, misattributed to a treatment, or magnified by placebos and cues.
While diagnosis is sometimes said to have a reassuring effect, a patient
receiving a diagnosis could also experience a sharpening of the symptoms
now collected in a disorder with a clinical name. Precisely because our
symptoms are available for heightening, “in a randomized controlled trial
of an analgesic device, 12% of patients receiving a placebo device reported
intensification of their pre-existing pain.”41
But what does it mean to report a symptom? Does it mean actually tell-
ing someone about it or just checking a box? If the first, does it mean offer-
ing the information spontaneously or in response to questioning? The way
such data is gathered matters. If a questionnaire in a clinical trial is con-
structed in accordance with the rule, “above all else ask only what you need
to know,”42 then alternative possibilities are edited out before the form ever
goes to print, and the quest for information becomes an exercise in closure.
(To take account of adverse events that were missed, or whose significance
was missed, in clinical trials, drug labels are sometimes changed years after
the drugs themselves hit the market.) What of those reporting symptoms in
one sense or another? If passersby on the street are screened for evidence
of trauma after a disaster, if patients receiving routine care are screened
for depression, if a questionnaire about sexual behavior is administered to
patients waiting to see a doctor about something else, such exercises can pro-
duce data that would never have come to light if a motivated seeker hadn’t
gone looking for it. Detailed survey questions and screening instruments,
too, can elicit information that wouldn’t have appeared of its own accord.
As it happens, a markedly higher incidence of placebo side effects is
recorded when the takers are specifically asked about them than when
they report them without guidance or prompting. The former risks
SEARCHING FOR SIGNS 85

overreporting as a result of suggestion, the latter underreporting as a result


of recall bias. The difference between guided and unguided report plays
out in Phase I clinical trials—short, often uncontrolled tests on healthy
volunteers conducted to determine the tolerability of a given drug at given
dosages. Because these trials are run in the hope of eventually bringing a
product to market, those who manage them have a disincentive to elicit
reports of all manner of adverse events, which is what presenting subjects
with an itemized list of possible side effects could well result in. In order
to avoid giving suggestions of any kind, managers of many Phase 1 trials
limit themselves to asking the subjects, with exaggerated neutrality, “Do
you have anything to report?”43 In direct contrast to the Paxil ad that tells
the reader in so many words what he or she is experiencing (“You blush,
sweat, shake—even find it hard to breathe”), the questioner in this case
refers to no adverse event whatsoever. The ad is designed to be maximally
suggestive while the question excludes the effects of suggestion.
The reported events are then coded for official purposes into some 110
categories, from abdominal pain to weight loss. What if Phase 1 subjects
were presented with such an encyclopedic inventory to begin with? If giving
a checklist of symptoms to volunteers who haven’t been treated produces
all sorts of reports, what information would emerge from subjects treated
with untested drugs? In other cases, reports of side effects are known to
skyrocket as soon as subjects are asked about them by name. Thus, “only 2%
to 7% of patients spontaneously report sexual side effects with SSRI ther-
apy, but when a sexual dysfunction questionnaire is used, the incidence of
sexual dysfunction rises to 55%.”44 (In this case, however, the anonymity of
a questionnaire could bring out information people would otherwise hesi-
tate to disclose.) In a Canadian study, when patients with Mild Traumatic
Brain Injuries were asked about the symptoms they were experiencing, they
reported an average of 3.3. The same patients, given a ready-made check-
list of MTBI symptoms, checked an average of 9.1. Fully 92 percent of the
patients confirmed the presence of four or more symptoms on the checklist,
as against 44 percent who did so spontaneously. “Overall, it was common
for patients to endorse symptoms on the [checklist] despite not sponta-
neously reporting those symptoms during the interview .  .  . Remarkably,
endorsement of some symptoms was more than 6 times greater when using
a questionnaire.”45 Apparently the mere fact of giving the patients a ready-
made list of symptoms acted as a prompt—something to be borne in mind
when we consider the effects of ads that specify the symptoms of ambiguous
conditions, ads engineered to be a lot more suggestive than a questionnaire.
Similarly, presenting a college student with an index of symptoms for
ADHD is a formula for overreporting even if the patient isn’t dishonest.46
It’s presumably because of the cuing effect of checklists that drug makers
86 THE NOCEBO EFFECT

run publicity campaigns to encourage their use; at once voluntary, pain-


less, familiar, and easy to tabulate, such exercises appear procedurally irre-
proachable even as they generate the desired results. By the same token,
while the DSM’s enumeration of symptoms gives the impression of strict
diagnostic criteria, the very procedure of going down a checklist may favor
the overreporting of disorders, which is the effect the DSM has had. Not
only, then, does the common treatment for a disorder like depression come
from drug makers with a strong interest in enlarging the market, but the
protocol for diagnosing such disorders turns on the same practice of look-
ing for flagged symptoms that the drug makers encourage when they want
to maximize incidence and that’s known to increase adverse effects in pla-
cebo groups of clinical trials.
Such is the striking gap between prompted and spontaneous responses
that data from a group of clinical trials “found that 7.5% of participating
patients reported no adverse effects at all in unprompted questionnaires
but rated some adverse effects even as ‘severe’ in the prompted question-
naire.”47 Evidently the patients had ambiguous experiences that could either
recede from memory or rise in significance depending on the way they
were reported. The cuing effect of itemizing adverse events, rather than
leaving them to be reported spontaneously by subjects, is strong enough
that studies that don’t make clear which reporting method was used are
hard to interpret. In some trials, moreover, it appears subjects are dou-
bly cued, first by the language of the consent form, then—after treatment
has begun—by questionnaires itemizing side effects. Given the suggestive-
ness of cuing effects that seem to operate quite outside our awareness, we
can’t rule out the possibility that a popular diagnosis like SAD can provide
what amounts to an accredited list of symptoms that patients are subtly
prompted to match up with their own experience.
As noted, checklists per se shape responses merely by singling out
symptoms that may or may not present themselves distinctly to patients in
the absence of such an inventory. Finding that patients with MTBI report
many more symptoms on a checklist than they do unprompted, research-
ers theorize that lists of official symptoms not only act as cues but may
even serve to organize the patient’s experience of otherwise indeterminate
symptoms, via the nocebo effect. “Researchers have reported that social-
psychological factors such as the nocebo effect can influence the develop-
ment and maintenance of postconcussive symptoms and problems,”48 in
that the expectation that symptoms will take a certain predetermined form
shapes the patient’s understanding of them. Perhaps most suggestively for
this study of the medicalization of normal conditions, many of the symp-
toms of MTBI are in fact hard to distinguish from normality.
SEARCHING FOR SIGNS 87

Just as effects induced in clinical trials by consent forms and adminis-


tered placebos also play out in the marketplace in less controlled ways, so
the prompting effect of symptom lists has implications beyond the bound-
aries of research. An example concerns Critical Incident Stress Debrief-
ing (CISD), a one-session procedure administered to groups of trauma
victims shortly after the event, wherein participants are encouraged to air
their emotions and are advised of the symptoms of PTSD likely to manifest
themselves in the future. (But “likely” according to what calculations? Esti-
mates like the claim that half of those exposed to trauma suffer permanent
effects are without foundation.)49 Yet many trials have found CISD either
ineffective or harmful, such that it doesn’t aid and may hinder the pro-
cess of recovery. An intensive review of the CISD literature concluded that
“psychological debriefing is either equivalent to, or worse than, control or
educational interventions in preventing or reducing the severity of PTSD,
depression, anxiety and general psychological morbidity”—an especially
troubling finding, given that CISD is sometimes mandatory.50 In view of
the evidence pointing not just to a lack of efficacy but probable harm, CISD
must be listed among those interventions falsely assumed to be so thera-
peutic that they make the actual evaluation of harms and benefits unneces-
sary. We can only be grateful that the estimate of 2.5 million New Yorkers
thought to be in need of immediate psychological aid as a result of the
September 11 attacks proved to be highly inflated.51
How could a procedure as well intended as CISD yield perverse results?
Possibly because it specifies the symptoms of PTSD in an effort to prepare
trauma victims for them,52 and the expectation that a symptom will occur
prompts its occurrence.53 Bear in mind the strong context framing both
the forewarning and the eventual report of symptoms: “If you take a group
of disoriented and unsettled victims mere hours or days after a life-altering
tragedy, put them in a highly charged encounter where they are told to
expect certain psychological symptoms, and then they share their experi-
ences, you are creating the perfect setting by which emotions are likely
to spread and intensify.”54 But while the recently traumatized are likely to
be especially suggestible, the process by which primed expectations lead
to nocebo outcomes isn’t limited to extreme situations and their after-
math. The overdetection of lumps in breast self-examination, the regular
occurrence of adverse events cited in consent forms, and the persistence of
labeled as opposed to unlabeled symptoms (see Chapter 5) also illustrate
the signal distortion produced by medicalization.
Interlude

Medicalization and Magnetism

In order for us to impute medical power to inert substances, they must


be represented to us as powerful in the first place. The doctor doesn’t just
hand us a placebo, after all, but makes sure to use ceremonial phrases like
“This pill has helped many other patients,” as in scripts in placebo studies.1
Research designed to elicit the power of the placebo often employs theatri-
cal techniques, and as a kind of stage effect the placebo reads like a way
of both capturing and beguiling attention. We suppose therapeutic power
resides in the pill in our hand rather than, say, the intangible but potent
bond between doctor and patient or the inspirational effect of a pill that
has conquered the marketplace. The placebo effect has a natural affinity
with advertising in that both employ highlighting and distract our atten-
tion from some things in the act of turning it toward others (the root of
“advertise” being, in fact, “turn toward”). Ironically, the first investigation
in England of the medical power of inert objects has itself been overshad-
owed by more a celebrated counterpart.
The counterpart was the investigation of Mesmerism by an eminent
commission of inquiry, which included both Lavoisier and Benjamin
Franklin, impaneled by the King of France in 1784. Named for and focused
on a charismatic figure who arrayed himself in lilac robes and purported to
be in touch with a cosmic fluid known as animal magnetism, Mesmerism
in all its theatricality was in fact nothing but a placebo effect, as the skep-
tical investigators proved experimentally. As strongly identified with the
maestro as Mesmerism was, the brand eventually went generic, evolving
over the following century into the practice of hypnotism. (Even today, for
that matter, the doctrine that trauma remains bottled up inside unless and
until it’s properly released recalls Mesmer’s theory that human ailments
are caused by blockages of the universal fluid.)2 A sort of healing rod of
American origin that found a market in England in the 1790s claimed as its
power source not animal magnetism but the then more reputable animal
electricity, and preserved its brand identity by being patented. Known by
90 THE NOCEBO EFFECT

the name of its inventor, Perkins, and described as a tractor for its alleged
power to draw pains from the body, this cult object of brass was exposed
as a sham by English medical investigators in a series of trials that were no
less probing than the inquest into Mesmerism, though less remembered.
Amid enthusiasm for the healing power of the Perkins tractor, the phy-
sician John Haygarth, assisted by William Falconer (author of a notable
study of The Influence of the Passions upon Disorders of the Body [1788]),
put its powers to the test in 1799 by treating chronic-rheumatism patients
in the Bath General Hospital first with wooden rods made to look identical
to the Perkins instrument, then with the thing itself.

On the 7th of January, 1799, the wooden Tractors were employed. All the five
patients, except one, assured us that their pain was relieved, and three much
benefited by the first application of this remedy .  .  . If any person would
repeat these experiments, it should be done with due solemnity. During the
process, the wonderful cures which this remedy is said to have performed
ought to be particularly related. Without these indispensible [sic] aids, other
trials will not prove as successful as those which are reported above. The
whole effect undoubtedly depends upon the impression which can be made
upon the patient’s imagination.3

Informed by the assumption that a valid result must be replicable, testing


an allegedly active treatment against a control, and using blinded subjects,
staging techniques and a kind of script, the Haygarth experiment strikingly
anticipates today’s experiments on the placebo effect, some of which con-
tinue to take liberties with informed consent.4
Just as Haygarth lacks the renown of Lavoisier and Franklin, and the
Perkins fad lacks the sensationalism and Dionysian energy of the Mesmer
movement, the experiments conducted on the Perkins tractor in Bath aren’t
as well known as the exposé of Mesmerism conducted in Franklin’s gardens
near Paris. One of Haygarth’s findings or subfindings has received even less
attention. Inasmuch as the term “placebo effect” hadn’t yet come into use,
Haygarth thought of his experiment as a test of the power of an inert object
to induce somatic effects in general, not just therapeutic effects. The title
of his pamphlet detailing the Bath experiments—Of the Imagination as a
Cause and as a Cure of Disorders of the Body—likewise doesn’t single out
or privilege benign effects. Where authors were once able to envision, say,
depression and anxiety without being constrained by the belief that they
are two separate clinical entities, Haygarth envisions the imagination as
acting on the body without subordinating noxious effects to therapeutic
ones. In today’s medical literature, the nocebo effect is a footnote to its pos-
itive counterpart. For Haygarth, however, a sham tractor’s power to induce
noxious effects establishes the power of the imagination—the point he’s
MEDICALIZATION AND MAGNETISM 91

concerned to make—just as well as its ability to relieve pain. His pamphlet


cites several such instances.
Reported at length is the case of one Peter Seward, who experiences
sharp pain while being treated (that is, touched) with wooden tractors. In
the presence of several witnesses, he becomes so distressed at one point
that he

begged the operation might be discontinued. His request was complied with,
and he immediately went to bed, with a pulse at 120. Three quarters of an
hour after (being still in bed) I asked him how he felt himself? He replied,
that “he was in more pain than when the surgeon took five pieces of bone
from his leg in a compound fracture, which he unfortunately met with in
Wales.” It may, perhaps, be thought that he feigned all this. I cannot assert
that he did not; but he could have no point to gain by such a conduct, and he
certainly must have been a very excellent mimick to deceive so many people.

A month later, a patient suffering from “great stiffness and occasional pain
in the shoulder” received the same treatment, with similar results.

In a few minutes he was seized with a tremor in his limb, and so violent a
shivering fit, that it was judged prudent to desist for the present. The next
day I wished to repeat the trial, but he positively refused; alleging that his
arm was quite well, and therefore it would be putting him to useless pain . . .
This case bears a striking resemblance to Peter Seward’s; both wonderfully
depicting the powers of the Imagination. Had these effects followed the use
of the Patent Tractors, it would have been termed metallick influence, and
would have been considered as resulting from their mysterious combination
of metals.

Two centuries later, similar results emerged from a similar experiment.


Instead of a purported conductor of animal electricity, investigators this
time used a magnetic instrument, “a well-engineered, impressive-looking
device with visible dials and a pair of paddles that were placed close to the
painful part, but did not touch the patient.” As in Haygarth’s experiment,
“the conditions of sham and actual treatment were identical,” except that
the study was now double-blinded. Of the 58 patients with chronic pain
who began treatment, “five patients discontinued the trials because they
had been made worse. On reexamination at 6 months, 3 of these patients
believed the treatment made their pain permanently worse. All 3 received
only a sham treatment.”5 Of the 45 patients who completed the entire
series, 12 percent reported that their pain was worse; while in those trials
in which the machine was covertly deactivated, 11 percent reported that
their pain had become worse, as against 13 percent who reported “definite
92 THE NOCEBO EFFECT

improvement,” a negligible distinction. The authors conclude that in treat-


ments for chronic pain, “a small group of patients, in the range of 10–16%,
will consistently respond to treatments that have no possibility of being
directly therapeutic. An equal number of patients will think themselves
made worse by a therapy when in fact only their perception has changed.”
In the era of medicalization whose treatment of choice is a pill, the
placebo effect clearly enjoys free play, yet medicalization fuels nocebo
outcomes as well. Consider an analogy, then, between medicalization
and a magnetic device capable of inducing either noxious or therapeutic
effects. The terms that supply the catchwords of medicalization, and win
support for the expansion of medical boundaries and jurisdiction, pos-
sess a magnetism of their own; unless we were attracted to them, a label
like “ADHD” couldn’t have become colloquial and the signified disorder
couldn’t have begun to seem like a natural entity. In the magnetism experi-
ment, “patients were placed on a treatment table from which they were able
to see the device and note that lights were lighted and control dials were
operating.” With its reliance on awareness crusades and other modes of
theater, medicalization itself plays on salience effects and has the mystify-
ing impressiveness of a well-engineered machine whose lights and dials
do we know not what. Like a device that beguiles by capturing the eye, the
medicalization movement focuses perception on fixed topics and chosen
findings (to the neglect of the undersea mountain of studies unpublished
because they yielded the wrong results). The drama of the magnetic device
was enhanced by artistic flourishes like the long white coats of the techni-
cians, who told the patients they weren’t doctors but were believed to be
doctors anyway. Ads for medications feature their own artistic touches, and
the charisma of pills can be enhanced by both branding and folklore, as
with Prozac. Where the magnetic device provided relief to some, diagnos-
tic labels can relieve by taking the enigma out of a condition, pinning it
down, with the name acting as a symbol of medical mastery and manage-
ment. On the other hand, labels can reinforce symptoms, as a diagnosis of
ADHD confirms “preexisting assumptions that the child is and will remain
unable to take control of his own behavior.”6
In part because the nocebo effect has been thrown into the shade by
the brilliance of its celebrated counterpart, the pages to come concentrate
mainly on the nocebo potential of the medicalization movement. As a study
of Tolstoy points out, “It matters greatly where we focus our attention.”7
4

Overdiagnosis and Its Harms

Placebo/Nocebo

The placebo effect refers to a therapeutic benefit arising as a rule from the
expectation of benefit itself, not from the actual composition of a treat-
ment. Thus patients who are told they are receiving a painkiller but actually
get saline solution can still enjoy an analgesic effect owing to the evocative
power of the medical ritual. Note that this model doesn’t entail that the
benefit of the treatment is illusory. On the contrary, placebos can stimulate
the release of the body’s opioids, an effect that can be blocked by the opioid
antagonist, naloxone. Correspondingly, the nocebo effect refers to a harm
arising from the expectation of harm, as when people led to believe they
have suffered a toxic exposure fall ill. While the nocebo effect is ethically
difficult to study and much of the knowledge about it derives from obser-
vation and accidental findings rather than experiment, both the placebo
and nocebo effect appear to operate largely through the power of sugges-
tive messages, enhanced in many cases by theatrical effects. Among the
messages capable of springing to life in our minds and bodies are those
that propel the process of medicalization. “Telling people they are sick
undoubtedly has a strong negative placebo effect.”1
Whether because of the bias in favor of the positive that makes for the
underreporting of harms and adverse events in clinical trials2 or because
the placebo effect represents a potential resource while its twin doesn’t,
the medical literature takes a disproportionate interest in the power of the
placebo.3 In 2012 it was estimated that there are 15 times more articles
on placebo than nocebo in the PubMed database, and well over 15 times
more studies.4 While no law of nature dictates that for every placebo event
there has to be a nocebo counterpart, the nocebo effect is clearly of greater
import than the one-sidedness of the literature suggests. Indeed, the same
substances—nitrous oxide, for example—can produce either painkilling or
painful effects depending on their presentation, and the same experimental
94 THE NOCEBO EFFECT

designs and methods can produce either a placebo or nocebo outcome,


sometimes in succession. You can even experience placebo and nocebo
effects at the same time.5 The virtual parity of the two effects in the labo-
ratory leads some to picture them as a single Janus-like event: “By taking
the findings on nocebo and those on placebo together, the placebo-nocebo
phenomenon represents a nice example of how positive and negative
expectations about pain affect different neurochemical systems.”6 Though
it remains unclear how far this symmetry extends beyond pain experimen-
tation, it would be a mistake to allow the charisma of the placebo effect to
blind us to the nocebo potential of medical practices. Placebos themselves
can bring on the undesirable effects of the drugs they stand in for, although,
tellingly, as recently as 1999 it could be said that this phenomenon wasn’t
well known and hadn’t been methodically investigated.7
Despite the bias in favor of the positive responsible for the literature’s par-
tiality for the placebo, even a seemingly uncontroversial medical intervention,
such as an effort to “educate,” can backfire. “It should not be taken for granted
that interventions would automatically have a positive outcome,” cautions A.
F. Cooper, instancing a study where patients with rheumatoid arthritis receiv-
ing “education” as well as standard care fared worse than those receiving care
alone.8 Because words are capable of moving us in different ways, interventions
in the same study could theoretically promote both placebo and nocebo out-
comes. This could be the case in K. B. Thomas’s classic study, conventionally
read solely as a demonstration of the power of the placebo.
Recall that Thomas randomly divided patients with minor complaints
into two groups, one of which was told in definite terms that they would soon
improve, the other that he didn’t know what was wrong with them; those
in Group A recovered significantly faster.9 The Thomas paper discusses the
placebo effect, is intended to make the point that positive messages (in the
double sense of being unequivocal and reassuring) are therapeutic in them-
selves, and is so read in the placebo literature. But given that the patients
suffered from ordinary complaints that resolve on their own, the most com-
mon of which were coughs and colds, the study can also be read in reverse,
as introducing an element of worry that delayed recovery. A strong argument
holds that the medicalization of ordinary problems feeds the nocebo effect
in almost the same way, impairing the ability to cope by sending the message
that life’s adversities require professional monitoring and management. In
the Thomas study, maybe those with positive consultations simply enjoyed
the effect of spontaneous improvement, while the other group had their
improvement slowed in a way that mirrors larger processes of iatrogenesis.10
He himself notes, “Much of the minor illness in this investigation might have
been expected to resolve spontaneously, and it is surprising to find that after
two weeks 61% of those patients receiving a negative consultation said that
OVERDIAGNOSIS AND ITS HARMS 95

they were not better.”11 By treating the minor illnesses of Group B as if they
weren’t exactly minor, Thomas could have fed the nocebo effect. In a related
study he got surprisingly good results by giving no diagnosis at all to over a
thousand patients suffering only from “the ordinary ups-and-downs of life,”
patients who “are not ill in the accepted sense of the word . . . and want only
reassurance and support from their doctor.”12
Studies that run treatment against placebo but lack a no-treatment
group don’t allow firm conclusions about the placebo effect. In an unusual
study where the treatment itself was a placebo, and was run against no-
treatment, men with chest pain were given superfluous tests for the sake
of reassurance.13 Yet despite the study’s positive findings, it would be
a bad idea to recommend tests purely for their presumed psychological
benefits. To say nothing of the resources wasted on these exercises, such a
practice would be in defiance of the qualified conclusions and cautionary
language of the study itself, including the reminder that “these findings
may not apply to other patients, chief symptoms, or diagnostic tests.”14 A
study in which men with chest pain have unnecessary tests isn’t intended
to furnish a model for general application. Its application even to its own
subset of patients is limited. As the authors acknowledge, after four months
(the second of two checkpoints) there were no significant differences in
reported pain or activity level between the tested and untested groups,
which suggests that the benefits of the tests were temporary and that those
who had them could have arrived at the same outcome with the passage of
time. Meanwhile, though, their notion of good medicine could have been
recalibrated to include excessive testing, as noted in the study itself. “The
use of diagnostic tests may affect the patient’s future expectations.”15 One
test leads to another, and an anxious patient undergoing successive tests
that reveal nothing may derive from the exercise not relief but frustration
and, indeed, anxiety. Even if they don’t yield incidental findings that are
concerning but go nowhere,16 tests recommended for their placebo value
could actually, like the Thomas study, feed the nocebo effect.
At times, indeed, the placebo effect seems shadowed by its opposite.
It’s known that in antidepressant trials response to placebo runs highest
in those with mild forms of depression—that is, those whose diagnosis as
clinically depressed is most questionable.17 In order to enjoy the placebo
effect, these subjects had to believe themselves depressed in the first place,
which in turn means (as I’ve suggested) that they were led or misled to
believe that their brain chemistry was awry, or their disorder was destined
to continue or even progress unless treated, or their ability to ride out
adversity was compromised. If they hadn’t received a noxious diagnosis
they wouldn’t have qualified as placebo responders. Especially in an era
of rampant overdiagnosis, we err to overlook the harmful potential of the
96 THE NOCEBO EFFECT

diagnostic label: its potential not so much to stigmatize the patient in the
eyes of society (about this the literature has plenty to say) as to plant sug-
gestions in the mind of the patient.
In the fictitious case of the woman released from a repressed history of
suffering by “the magic of the right word”—an act of healing likened to the
ministrations of a witch doctor—diagnosis has therapeutic value in and of
itself. In the same spirit, a paper in the Journal of Family Practice in 1980
argued that diagnosis per se constitutes treatment, first because it enables
patients to make sense of their suffering, second because “diagnosis is often
a crucial factor in encouraging the expression of caring and support from
family and friends,” lastly because “the ability to give something a name
implies the ability to gain control over it.”18 Just as the paper never men-
tions the nocebo effect but discusses its opposite, it never considers the
possibility that a diagnostic label can intensify symptoms. In the case of
chronic fatigue syndrome, for example, some conclude that the label

may contain a harmful message that triggers or validates perceptions of ill


health and catastrophic outcomes. If this message takes root in a person suf-
fering from fatigue . . . it becomes a self-fulfilling prophecy that perpetuates
and exacerbates symptoms, with comprehensive consequences.19

What if K. B. Thomas’s patients presenting with miscellaneous pains (the


predominant complaint) were told they might have chronic fatigue, or
myalgic encephalomyelitis, a mystery ailment then much in the news in
Britain? Not only does the ability to name not assure the ability to control,
but a diagnostic label can have a symptom-summoning effect like the litany
of adverse events in a consent form. Even if retracted as erroneous or oth-
erwise cleared up, a diagnosis can be so potent that it lives on in the mind
and body. And if diagnosis is treatment, what’s overdiagnosis?
In direct rebuttal of the position that the act of diagnosis is therapeutic,
a critic of excessive diagnosis cautions that

many diagnoses are simply “placebo” diagnoses given either because we


demand them or because the reimbursement scheme does. We must learn to
accept that we may sometimes be better off without any diagnosis at all and
that medicine cannot always find a label for our aches and pains. In no case
should we allow the label to become the person.20

In keeping with the assumption that nocebo effects have as much claim on
our concern as the placebo effects preferentially discussed in the medical
literature, this chapter looks into the possible harms of diagnosis—in par-
ticular, those that follow from the elevation of common conditions into the
disorders we read and hear about daily in an era of medicalization.
OVERDIAGNOSIS AND ITS HARMS 97

Protesting the magnification of everyday matters into medical issues, the


chair of the DSM-IV Task Force points out that “in the past 20 years, the rate of
attention-deficit disorder tripled, the rate of bipolar disorder doubled, and the
rate of autism had a more than 20-fold increase,” from which he concludes that
“every change in the diagnostic system can lead to unpredictable overdiagno-
sis.”21 On the basis of such massive and obviously noncoincidental increases, a
sounder conclusion would be that inflated diagnostic criteria wielded by activ-
ist medicine lead inexorably to overdiagnosis. (Certainly it would be hard to
blame the drug companies—the usual suspects—for the most astronomical of
the cited increases. As no medication for autism as such exists, this can’t be a
case where Big Pharma peddles the disease in order to profit from the remedy.)
And with overdiagnosis goes the popularization of diagnostic labels such as
“ADHD,” a term that didn’t exist until 1987 but is now part of the common lexi-
con. Even if a diagnosis of ADHD didn’t lead to medication that children buy
and sell on their own black market,22 there would be every reason to refrain
from the wholesale use of such an inflammatory label. More on the sugges-
tive potential of the ADHD diagnosis to follow. For now it’s important to note
that the effects of diagnostic labels on a patient seem to have been of no con-
cern to the makers of DSM-III. During the years of crisis from which DSM-III
emerged, the only ones concerned with the harms of psychiatric labels were
the antipsychiatry forces, among them R. D. Laing, for whom a label meant
nothing but a stigma attached to disapproved behavior. The use of diagnostic
judgments to subjugate the oppressed is one thing, and a label’s power to orga-
nize a patient’s own experience another. While the former was the talk of the
1960s, the latter received and has still received little attention—a lack that has
left it a free field to operate in.
A medical label attached to a normal condition constitutes an invitation
to the nocebo effect. According to a researcher who has advanced under-
standing of its positive counterpart, the main reason far less is known
about the biology of the nocebo has to do with “the ethical limitations of
giving negative information to patients.”23 That is, it would be unethical to
feed patients false expectations of distress for purposes of investigation.
In that an inflated diagnosis raises just such expectations, we can say that
ethical considerations paradoxically inhibit the investigation of everyday
medical and psychiatric practices.

Depression

“The aim of [interviewing] a patient was to discern a clinical syndrome.


The recognition of syndromic patterns served as the basis for recommend-
ing a treatment even though the underlying pathophysiology or etiology of
the disorder was unknown . . . There were no lab tests . . . Not surprisingly,
98 THE NOCEBO EFFECT

syndromic recognition is difficult to practice. Various diseases present the


same signs and symptoms.”24 While referring to the practice of the Hip-
pocratic physician in ancient Greece, this description also applies point for
point to the diagnosis of mental disorders under the reign of the DSM. Here
too the aim is to identify significant patterns of symptoms in the absence of
laboratory tests, without consideration of etiology, and despite the inherent
ambiguity of symptoms and the overlap of categories. The interpretation
of patterns is all the more unreliable when guided by a strong expectation
of finding them, as when screeners search for theoretically telltale clues of
mental disorders.
Scouring the population for symptoms that occur throughout the popu-
lation because they are part of human life is a formula for finding what
you’re looking for, and just that was the result when crusaders went out
into the community in the 1960s in search of signs of distress or sadness,
to be interpreted as presumptive evidence of clinical depression. Based as
it was on the enumeration of allegedly specific symptoms, the diagnostic
system of DSM-III placed the diagnosis of depression on a more solid and
secure foundation than before, in principle. Even now, however, screening
proves to be an engine of diagnostic inflation.
Just as DSM depression appears more specific than it actually is, some
tests for depression are so loose that they strain the meaning of “test.” The
US Preventive Services Task Force recommends that for screening pur-
poses doctors ask just two questions: “Over the past 2 weeks, have you felt
down, depressed, or hopeless?” and “Over the past 2 weeks, have you felt
little interest or pleasure in doing things?” (Note the absence of the DSM
qualifier, “most of the day, nearly every day.”) A Yes to either question leads
to a full diagnostic interview using DSM criteria. Bearing in mind that as
many as half of patients asked the two magic questions will answer Yes to
one of them, and that the entire group will probably be taken to have met
the cardinal DSM criterion for depression (depressed mood or anhedonia),
it follows that in order to qualify in full as depressed they need only show
four secondary symptoms on a list that includes many common ills. By
these procedures, a lot of the population is going to be depressed.
What might it mean to be diagnosed as depressed because you filled out
a questionnaire when asked to, only to discover that you meet the speci-
fications of Major Depressive Disorder? Consider that “cross sectional
surveys of depression tend to pick up depression and transient distress,
found in response to psychosocial problems and life events. When these
populations are followed up, a substantial proportion of people identified
as a ‘case’ by screening will have symptoms that resolve within two to four
weeks.”25 That the symptoms pass doesn’t mean the label disappears with
them. Sometimes it lingers in the mind of the diagnosed patient, radiating
OVERDIAGNOSIS AND ITS HARMS 99

its dark connotations. As programs that screen for depression “become


part of our lives, they potentially influence our self-concepts . . . and offer a
new form of social penetration of our private emotions,”26 and among the
more noxious forms of this infiltration is a label that outlasts the condi-
tion itself. It certainly lasts in the medical records. It appears that many of
those overdiagnosed as depressed in primary care have been diagnosed as
depressed before; in a pattern all too suggestive of inflation, the primary-
care provider, familiar with this history, now interprets ambiguous markers
as signs of a recurring disorder.27
In response to the proliferation of subthreshold forms of depression
requiring only a few symptoms, a team proposed checks that would “pre-
vent labelling broad populations of individuals in the community who may
not see themselves as suffering from a mental disorder (and who neither
seek treatment nor are impaired).”28 But patients diagnosed with depres-
sion when they see a doctor for another reason may fall into the same
category. A diagnosis of depression that comes unbidden, as a result of
screening when you seek treatment for something else, can be especially
disquieting, and most cases of depression by far are identified and treated
in the setting most likely to generate an unsought diagnosis—again pri-
mary care. Not only, then, does the overzealous diagnosis of depression
not lead to positive outcomes, but it opens up the possibility of adverse
ones as the patient absorbs a heavily tendentious understanding of his or
her problems.
As noted by critics of screening for depression in primary care, “We
know little about the potential ‘nocebo effect’ of telling patients who are
otherwise not specifically concerned about their mental health that they
have depression.”29 Virtually by definition, a psychiatric condition that
overlaps normality can go unrecognized by the person who has it, and for
such a person to discover during a visit to the doctor that he or she has a
disorder as seemingly insidious as depression could actually be depress-
ing. If patients can make their symptoms more distressing by attributing
them to a suggestive cause, so can a medical diagnosis that overinterprets
common symptoms in the first place. After all, to be diagnosed as clinically
depressed can easily be taken to mean there’s something chemically amiss
in your brain (the reigning explanation at this moment) or that your dis-
tress is destined to continue, as if you were entering a tunnel with no end.
In any case, diagnosing patients as depressed can leave them shaken, espe-
cially if they don’t think of themselves as suffering from a mental disorder.30
A certain patient “was shocked by the diagnosis since he had understood
depression as something which happened to other people, and which was
abnormal. Depression was not a useful label for his experiences and the
diagnosis appeared to compound his problems.”31 To construe normal
100 THE NOCEBO EFFECT

distress as depression without considering the risk of a nocebo effect, as in


this case, is to abuse risk/benefit calculation. Furthermore, if such distress
is treated with antidepressants, patients will be learning to think of them-
selves as depressed while under the influence of side effects ranging from
insomnia and malaise to restlessness,32 all of them paradoxically official
symptoms of depression itself.
It seems most patients diagnosed with depression in primary care don’t in
fact complain of depression but generic problems like disturbed sleep, fatigue,
or pain.33 In the medical literature this is adduced to explain why depression
often goes undiagnosed, but what if the patient who complains of such prob-
lems isn’t depressed? Common symptoms can be and undoubtedly are read
as evidence of depression in order to validate a diagnosis of depression by
supplying the distress or impairment that makes it clinically significant. The
risk of misinterpreting common problems as symptoms of depression is all
the greater because of the popularity of the diagnosis, because a ready-made
treatment exists in the form of a pill, and because a ready-made explanation
exists for why the patient complains of something else. The explanation is
that the patient has at some level opted to present depression in somatic form
because he or she can’t face up to the issue or stigma of mental illness.34 As
if suffering from what Marxists used to call false consciousness, the patient
contrives not to understand the plain truth of his or her condition—the
fact of being depressed. The doctor understands but the patient doesn’t. If
it can be prejudicial to describe unexplained physical symptoms like chest
pain, backache, and fatigue as somatization,35 why is it less so to construe
similar symptoms as evidence of depression? Note too that many common
symptoms—headache, back pain, abdominal pain, and other ills that appear
to be strong predictors of a depression diagnosis36—have nothing to do with
any of the official DSM symptoms of Major Depressive Disorder.
Another study already cited suggests that departures from DSM criteria
can pass all but invisibly. The DSM requires one of two cardinal and four
secondary symptoms of depression, almost all of which have qualifiers.
Thus, in order to count as diminished interest or pleasure the diminution
has to be “marked” and has to be shown “in all, or almost all, activities
most of the day, nearly every day” over a two-week period. One wonders
how strictly such qualifiers are observed in medical practice, especially
primary care. The actor-patient study already cited, which actually tar-
geted primary-care doctors’ response to requests for drugs, suggests: not
strictly. The following is the script for a patient with Major Depression, a
48-year-old divorced woman with two children:

She worked full time and had no chronic physical or psychological prob-
lems, and no family history of depression. She had been feeling “kind of
OVERDIAGNOSIS AND ITS HARMS 101

down” for 1 month, worse over the past 2 weeks. She complained of loss of
interest and involvement in usual activities, low energy and fatigue, sensitiv-
ity to criticism, poor appetite on some days only, and poor sleep with early
morning awakening. She had occasional trouble concentrating at work but
no excessive crying, confusion, slowing, agitation, distorted thinking or sui-
cidal thoughts.37

While a deterioration “over the past 2 weeks” is obviously tailored to the


DSM, it may or may not actually meet the DSM criterion of “depressed
mood most of the day, nearly every day” over a two-week period. (The DSM
language seems intended to preclude merely intermittent low mood, which
the vague “over the past 2 weeks” allows.) Loss of interest in usual activities
may or may not be equivalent to “markedly diminished interest . . . in all,
or almost all, activities most of the day, nearly every day.” The secondary
DSM criteria for depression require only a showing “nearly every day”—
a significantly lower threshold—but even this may not have been met by
the actor-patient. Intermittently poor appetite probably doesn’t meet the
DSM standard of “decrease . . . in appetite nearly every day.” Occasional
trouble concentrating at work falls short of “diminished ability to . . . con-
centrate . . . nearly every day.” In all of these instances the very precision of
the DSM criteria paradoxically allows the possibility of their being relaxed
in practice.38 That the bending of DSM criteria goes unmentioned in the
actor-patient study suggests the process may be so routine as to escape
notice. As with the requirement that symptoms must “cause clinically sig-
nificant distress or impairment in social, occupational, or other important
areas of functioning”—a clause of imposing appearance and little practical
effect—the strict qualifiers of the depression criteria are a paper tiger.
The doctors in the actor-patient study may have been more concerned
with missing symptoms of Major Depression—assuming of course that the
patient had Major Depression—than with fidelity to the DSM, and may
not have recalled the DSM language in any detail. Given that doctors are
known to have trouble remembering the depression criteria,39 they might
well also forget the several qualifiers attached to the primary and secondary
symptoms, which could easily lead to diagnosed cases of Major Depression
that fall short of DSM criteria and aren’t as dire as the formidable label
suggests.40
But the doctors in question didn’t have to forget the precise criteria
for DSM depression. If they were inclined to comply with the request of
a patient who seemed reasonably close to the criteria, that would suffice.
No doubt the reason TV ads for drugs urge you to “ask your doctor” is
that doctors are more likely to prescribe the drug that way, which is also to
say they’re willing to overlook gaps between the patient’s presentation and
102 THE NOCEBO EFFECT

DSM requirements. Although the actor-patient study, which was published


in JAMA, is concerned with the effect of requests on doctors’ prescribing
practices, nowhere does it note any disparity between DSM language and
the presented symptoms. Indeed, its citation of DSM language leaves out a
lot more than it includes.
Carefully fashioned to simulate Major Depression, the script in the
study was “reviewed by a scientific advisory committee consisting of
national experts in psychology, psychiatry, primary care, and SP [stan-
dardized patient] methods,” then “revised iteratively,” and after all this,
it failed to conform to DSM language that had been on the books for 25
years. It seems that in order to be credible the actor-patient couldn’t actu-
ally meet the DSM criteria. One doubts it’s unusual for doctors to forget,
ignore, or bend the several DSM qualifiers for depression. According to
Spitzer, false positives resulting from lax enforcement of the DSM criteria,
specifically including the temporal requirement for depressed mood, “may
be considerable.”41 An international study of the linkage between physical
symptoms and depression divides the DSM-IV criteria for depression into
the psychological symptoms of “depressed mood, loss of interest in activi-
ties, impaired concentration, feelings of worthlessness or guilt, and suicidal
ideation” and the physical symptoms of “insomnia or hypersomnia, change
in weight or appetite, fatigue, and psychomotor agitation or retardation.”42
No mention is made of any frequency or intensity qualifier in this paper,
which has been cited over 800 times.
Even a study that quotes the DSM criteria for depression in full can
arrive at a finding of depression that seems only tenuously related to them.
A paper titled “Is This Patient Clinically Depressed?” opens with the fol-
lowing scenario:

Mr P is a 52-year-old small-business owner with a 5-year history of con-


trolled hypertension, for which he takes a β-blocker. Otherwise, he is in
good health. He presents for routine follow-up and notes a 1-month his-
tory of mild to moderate, bitemporal headaches, and feeling fatigued. The
headaches occur about twice a week and are relieved by acetaminophen.
He denies chest pain or dyspnea on exertion. He notes wryly that the “new
economy” has left him feeling a bit “frazzled.”

With the patient’s diagnosis up in the air, the paper goes on to state,

Depressive symptoms are prevalent, cause marked personal suffering, and


are associated with increased mortality. In primary care settings, the preva-
lence of major depression ranges from 4.8% to 8.6%, and dysthymia ranges
from 2.1% to 3.7%. The World Health Organization estimates that major
depression alone was the fourth leading cause of disability worldwide in
OVERDIAGNOSIS AND ITS HARMS 103

1990 and will soon be second only to heart disease as a cause of disabil-
ity. Antidepressants and depression-specific psychological treatments are
clearly effective for depression, improving both depressive symptoms and
functional status.

By introducing these highly leading claims while the patient’s diagnosis is


still unresolved, the authors set up an overwhelming presumption in favor
of depression. Depression is at once too grave, too common, and too treat-
able not to be the diagnostic solution-of-choice to an ambiguous case like
Mr. P’s. (The efficacy of SSRIs, asserted as an indisputable fact, would come
into question when data from buried trials of the drugs was published.)
The paper duly arrives at this foregone conclusion.
So it is that Mr. P is outfitted with a semblance of the symptoms that
would justify a diagnosis of depression. At the end of the paper we are
informed summarily that

You follow up on Mr P’s “frazzled” comment and learn that he has been
under intense work-related stress. Knowing that recent stress increases
the likelihood of clinical depression, you ask, “Have you been feeling sad
or depressed much of the time?” Mr P has been feeling down nearly every
day for several weeks and on further questioning meets criteria for major
depression.43

The information provided gives no idea of how Mr. P. meets at least three
of the DSM criteria, featured in a table in the paper itself.
In all probability, a patient who reported feeling depressed “nearly every
day for several weeks” would be diagnosed as depressed then and there,
whether meeting all the other criteria or not—and whether he or she felt
depressed “most of the day,” as DSM language specifies. In fact, DSM-V
allows clinicians to waive diagnostic criteria at their own discretion. States
the introductory essay on the concept of a mental disorder, “Clinicians
may . . . encounter individuals whose symptoms do not meet full criteria
for a mental disorder but who demonstrate a clear need for treatment or
care. The fact that some individuals do not show all symptoms indicative of
a diagnosis should not be used to justify limiting their access to appropriate
care”—a grant of interpretive liberty that moots the painstaking specifica-
tion of DSM language at one stroke.
In sum, then, the textual criteria for depression may or may not be
observed in practice—and at that, these criteria include common com-
plaints, classify normal sadness as a clinical symptom, and don’t even
require sadness for a finding of depression. At once scholastically pre-
cise and expansive, such criteria make for inflated estimates, which feed
the assumption that depression is insidiously common (the assumption
104 THE NOCEBO EFFECT

framing the sketchy case of Mr. P.), which leads to the all-too-common
prescription of favored drugs.
Being diagnosed with depression when you aren’t depressed, but dis-
play symptoms misleadingly similar to depression, is a standing possibility
for pregnant women. Some 35 percent of pregnant women are reported to
show depressive symptoms while perhaps 10 percent suffer from depres-
sion per se, a disparity that suggests that symptom-counting—the basis of
the DSM diagnostic system—is better at producing diagnoses than at dis-
tinguishing facially similar conditions. Say a pregnant woman who doesn’t
seem to herself depressed, because she isn’t, learns from a doctor that her
answers to a questionnaire indicate depression. Whether or not informed
of the medical literature alleging the risks of untreated depression in preg-
nancy, such a patient could be shocked into taking antidepressants despite
the questionable wisdom of doing so.44
The most common treatment for diagnosed depression, antidepressants
carry their own risks to the patient’s well-being by way of their diverse
side effects including intestinal ills, weight gain, drowsiness, insomnia, and
reduced libido. The tendency to play down such events is illustrated by an
incidental comment in a generally fair-minded investigation of the theory
and practice of American psychiatry. Discussing the superiority of Prozac
to earlier drugs, the author notes that

with Prozac, people actually lose weight (at least for a while), and the major
side effect for most people seems to be jitteriness and, for a significant per-
centage of men, impotence. Prozac has meant that taking psychiatric medi-
cation for common anxiety and depression has become, practically speaking,
risk free.45

How a drug can be practically risk-free when a lot of the men taking it expe-
rience impotence is simply baffling. This isn’t to diminish the importance
of nonsexual side effects. A 2005 study found that treatment with antide-
pressants “inadvertently reduced the self-worth in patients non-receptive
to antidepressant medication,”46 while a related analysis points out that
many patients in the study were treated with antidepressants against their
wishes and saw their “physical role functioning” deteriorate.47 A medica-
tion whose common side effects include both drowsiness and intestinal
problems might well impair the ability to perform everyday tasks. A study
by Spitzer and others found “substantial” deterioration of “role function”
associated with insomnia, fatigue, abdominal pain, and dizziness.48 Con-
sidering that any one of these symptoms can degrade the ability to work
and that SSRIs have more than one side effect, it stands to reason that the
drugs can damage self-respect.
OVERDIAGNOSIS AND ITS HARMS 105

Current DSM depression language seems to recognize that the loss of


“role function” poses this risk. “Excessive or inappropriate guilt”—one of the
secondary criteria of depression—is to be distinguished from “guilt about
being sick”; but why should people reproach themselves for being sick?
Maybe because when sick we no longer work as well as before. Though the
DSM discounts such guilt for diagnostic purposes, the clause reminds us
that ills can be self-compounding: just as you can become depressed about
being depressed, you can fall into guilt over an illness that was diagnosed
in part on account of guilt. Clearly, medicine needs to be careful of setting
off this vicious dynamic, which resembles the cycle of symptom amplifica-
tion that a patient can get into without medical help. Practices like pinning
a label on people who might not be depressed, and treating patients who
don’t seek or want treatment, show a neglect of such caution.49
For someone not depressed might still come to believe a diagnosis of
depression. It’s a measure of the belief-inspiring capacity of medicine that
its props, costumes, stagecraft, and idiom can endow placebos with some-
thing like the power of drugs. That diagnostic labels in particular have a
way of inducing belief is suggested by the reality DSM categories acquire
for medicine and the general public even though many of the categories
are openly argued into and out of existence or otherwise shuffled. Consider
PTSD, a DSM-III coinage that quickly became part of American speech
and has generated a vast literature, new modes of psychotherapy, even a
specialty in civil law.50 As with conditions like ADHD, those patients inter-
ested in showing evidence of PTSD need only play up symptoms that over-
lap normality (symptoms in this case including depression), but it’s PTSD’s
power to command belief that creates the incentive in the first place. In
certain accounts of PTSD treatment, therapist and patient seem to believe
in the diagnosis as completely as if it had been in existence since the begin-
ning of time. Once a diagnosis like PTSD goes on the books, not only does
it acquire a social power symbolized by the literature and folklore it gives
rise to, but “careers are built around it, and patients formulate their symp-
toms to correspond to it.”51 The power of a diagnosis to acquire institu-
tional reality and shape the presentation of symptoms suggests that it’s very
possible for patients to come to accept a mistaken or questionable diag-
nosis, and argues for caution in applying diagnostic labels to the general
population.52 As noted above, the symptoms of PTSD can be unwittingly
suggested.
Over the decades since the DSM-III diagnostic system was adopted
following much wrangling, railroading, icon-smashing, and compromise,
the DSM has acquired such authority that its categories are widely taken
for granted. “This is because the language of DSM-III is being applied in
daily teaching and practice and necessarily takes on the look of something
106 THE NOCEBO EFFECT

that, more and more, seems natural—not made by human hands.”53 If pro-
fessionals can be convinced of the independent reality of their own con-
structs, patients can surely be persuaded that their diagnosed disorder is
real. Convinced doctors make for convinced patients. As we know, DSM-
III’s master-builder, Robert Spitzer, grants that DSM language influences
not only how third parties make decisions, but how patients see them-
selves. “It serves to define how researchers collect their samples, what con-
ditions insurance companies will reimburse, what conditions courts and
social agencies treat as illnesses, and how individuals themselves interpret
their emotional experiences.”54
This comment appears in a laudatory introduction by Spitzer to a book
that makes a compelling case that depression is massively overdiagnosed.
The unavoidable inference, that those wrongly diagnosed are led to misin-
terpret their own experience, is not drawn by Spitzer.

Prostate Cancer

With the advent and popularization of SSRIs, the prevalence of depression


rose,55 as if the availability of a treatment nourished the disorder. Prostate
cancer saw skyrocketing numbers over the same period. Like depression,
prostate cancer occurs commonly and may not actually constitute a medi-
cal condition, yet is screened for in primary care and the community at
large—plainly a formula for overdetection. In 2009 the long-awaited report
of the European Randomized Study of Screening for Prostate Cancer found
a disease-specific mortality benefit for screening, but at high cost.

PSA-based screening reduced the rate of death from prostate cancer by


20% but was associated with a high risk of overdiagnosis . . . To prevent one
prostate-cancer death, 1410 men . . . would have to be screened, and an addi-
tional 48 men would have to be treated. The high number of men who would
need to be treated could be improved by avoiding the diagnosis of indolent
cancers during screening or by improving treatment in the remaining men
with cancer.56

Why better treatment would reduce the numbers who undergo treatment
in the first place is far from clear. For now, in any case, the most common
treatment of prostate cancer, surgical removal of the prostate, entails a high
risk of such woeful outcomes as incontinence and impotence. It’s hard to
imagine that many would volunteer with eyes open for a test where 48 or
indeed 33—the revised figure given in 201257—ran the risk of impotence
for every prostate-cancer death spared, which suggests why informed con-
sent for PSA testing has been scanted in practice while affirmed on paper.
OVERDIAGNOSIS AND ITS HARMS 107

(Note too that a reduction in disease-specific mortality doesn’t necessarily


mean a reduction in mortality overall.) Such numbers strain medical rea-
soning. By 2005 some 1.3 million American men had already had unneces-
sary treatment for prostate cancer58—a measure of the harm resulting from
overzealous detection.
Unless urologists had abandoned conventional risk/benefit analysis,
they would not have launched mass screening in the 1990s without evi-
dence of benefit in hand, but with undeniable evidence of harm. What
is it that drives screened men to treatments that predictably bring sorry
consequences they would ordinarily do anything to avoid? It can only
be the diagnosis, the label, of cancer. Even in lesser cases, the power of a
medical label is such that it can infiltrate one’s sense of self. As mentioned,
screened steelworkers who learned they have hypertension saw their rate
of absenteeism increase sharply, quite as if they began to think of them-
selves as ill and acted accordingly.59 (If steelworkers can be made to see
themselves as “more ‘fragile,’” as the authors put it, who can’t?) Among the
study’s striking findings is that “illness absenteeism rose substantially after
labeling of previously unaware patients as hypertensive” even if their doc-
tor deemed treatment unnecessary,60 which in itself calls into question the
awareness cult.
Even since the institution of Prostate Cancer Awareness Week in the late
1980s, mass screening for the disease has been promoted under the banner
of awareness. (“Macon Beer Festival Raises Prostate Cancer Awareness,”
reads a headline on Google News.)61 But as medicine comes to recognize
that treatment of prostate cancer is often more harmful than the disease,
many who sign up for screening will find themselves in the position of liv-
ing with their condition and monitoring its progress, a course now known
as active surveillance. However improbably, a form of cancer thus takes
on a resemblance to a syndrome in which ills that are the common lot
of human life become foreground events and objects of anxious attention.
The self-identification of well over a million American men as cancer sur-
vivors, where the detected cancer strains the connotation of the word, is a
particularly strong example of the power of a diagnosis to color a patient’s
experience.

ADHD: Adults

If successful medicalization means public acceptance of the expansion of


medical boundaries and definitions, then it couldn’t take place without the
services of the media in fueling trends and promoting new medical enti-
ties. When a cover of Time magazine in July 1994 announced the possibil-
ity that adults could suffer from clinically faulty attention (“Disorganized?
108 THE NOCEBO EFFECT

Distracted? Discombobulated? Doctors Say You Might Have ATTEN-


TION DEFICIT DISORDER. It’s not just kids who suffer from it”) and
illustrated the idea with the image of a face torn two ways, it was clear that
adult ADD’s hour had come and the new disorder was now in the air like
wind-borne seeds.
Once the possibility of adult ADD was established it could be argued
that college students with the disorder had a right to special consider-
ations, and once such privileges were in place the unscrupulous had an
incentive for faking the symptoms of ADD, or as it was actually called in
1994, ADHD. The fact is that ADHD symptoms are easily simulated, both
because they’re common and because information about how to stage them
is widely available. It seems ADHD pretenders—“malingerers”—mine the
literature about their chosen disorder and use it to fashion a script for their
performance.62
In the world of fiction we meet with many a character who seems to be
performing a role virtually from a script and yet without the shamming
implied by a term like “malingering.” Such characters are enough invested
in their role that the passions that go along with it, or seem required by it,
somehow come to life in them. Both Tolstoy and Dostoevsky, each in his
own way, suggest you can even persuade yourself you’re in the throes of
romantic love. There is a lot of room for synthetic performances short of
faking—and so too, the symptoms of a popular disorder like ADHD can
be produced with none of the cynicism of an act of dissimulation, just as
adults can and do creatively remember signs of childhood ADHD without
any sense of making them up, simply as a result of what the literature calls
recall bias. Someone with a questionable somatic syndrome like late whip-
lash can build up symptoms through a combination of maladaptation to a
minor injury, anxious interpretation of bodily signals, and convinced belief
in the diagnostic entity in question and its surrounding lore. Someone with
the nonsomatic syndrome of ADHD can, analogously, build up symptoms
through a combination of self-reinforcing habits and convinced interpreta-
tions, the latter backed up by folklore and media reports with an aura of
medical authority. But in order for symptom-building to have something
to work with, a certain looseness of attention should already be present.
And so it often is. The study showing that ADHD symptoms are easy
to simulate also found them to be “somewhat ubiquitous”63 in the popula-
tion. Earlier I noted that in the same study (it looked for markers of sham
ADHD), 37 percent of the participants who were asked to respond hon-
estly reported that they sometimes had difficulty paying attention; that in a
1968 survey of 414 healthy volunteers, 25 percent of medical subjects and
27 percent of nonmedical subjects reported an “inability to concentrate”;
and that more recently, poor concentration was identified as belonging to
OVERDIAGNOSIS AND ITS HARMS 109

the “general symptom pool” of normal persons, along with such other pro-
saic ailments as headaches and disturbed sleep. So too, a review done in
Germany in 1999 rated “clouding of consciousness” as the most common
subjective adverse reaction to placebo,64 which probably means the inac-
tive medication picked up and amplified symptoms that were already there,
not that it somehow caused them. Evidently symptoms of hyperactivity,
too, are not particularly rare. The ordinariness of the elements of ADHD
gives the faker material to work with and makes the work easy, in that he
or she doesn’t have to go to the trouble of inventing symptoms from zero.
In the case of a person without dishonest intent, the preexistence of
symptoms like poor concentration or jumpiness means that the folklore
and publicity surrounding ADHD (also ubiquitous) act like the context of
“overwhelming information” that makes it possible for someone in a minor
accident to get caught up in chronic whiplash.65 Investigators of functional
somatic syndromes emphasize the importance of charged reports and
public controversy in disseminating not only information about the disor-
ders but the disorders themselves. Tapping into the appeal of folklore and
the authority of medicine at once, public talk about ADHD can heighten
ordinary symptoms precisely by giving them such an evocative label and
such a powerful validation. In this sense, the capital letters and bold cari-
cature on the cover of Time model the process of highlighting symptoms
and elevating their significance. A suggestive circumstance strengthens the
analogy between FSS’s and ADHD: Patients in the former category some-
times come to the doctor armed with their own diagnosis. (An important
element in the syndromes in question is the belief that you have them,
a belief supported by a kind of literature and confirmed by the evidence
of your symptoms.) Correspondingly, many patients are said to diagnose
themselves with ADHD and see a doctor to have the diagnosis made offi-
cial. “Frequently, adults who encounter a description of the disorder sense
that ‘this is me’ and go on to seek professional confirmation of their new
identity.”66 That one’s identity should be bound up in a diagnosis suggests
an overinvestment in the disorder at issue, and the sort of attention to
symptoms implied in the act of self-diagnosis is but a step away from the
anxious vigilance that fuels the promotion of ordinary events into clinical
symptoms.
If a key ingredient of a syndrome like ADHD is the belief that you have
it, what happens if you’re falsely diagnosed with ADHD as a result of loose
criteria and slippery diagnostic thresholds? While DSM-V was in prepara-
tion, the architect of DSM-IV and a coauthor argued that overdiagnosis
would certainly ensue if proposed changes in ADHD language were put
in place.67 (Rates of childhood ADHD had already shot up as a result of
textual changes introduced into DSM-IV.) Yet when detailing the harms
110 THE NOCEBO EFFECT

of overdiagnosis, they don’t consider that an inflated diagnosis could be


believed by the patient—a possibility not at all remote, given that overdi-
agnosed patients don’t know they’ve been overdiagnosed. In some cases
the belief that one has the disorder may simply confuse, while in others
the diagnosis can serve to boost ambiguous symptoms in keeping with the
nocebo effect.
Some adults diagnosed with ADHD solely because the diagnostic net
extends well into normality might feel that they can use the diagnosis to
their advantage, for the sake of what the literature calls secondary gain.
A college student so diagnosed could come away with a prescription for
methylphenidate, reputedly an academic performance-booster. Yet here
too a risk seeps in. “Ironically, while an apparent gain develops, an insidi-
ous process of secondary loss emerges. The process is so insidious that it
is often not detected soon enough to alert the patient about the loss of
self-esteem and self-mastery.”68 That is, through habit, social prompting,
and perhaps an assist from the nocebo effect, what was at first a calculated
performance can lead to results that were never intended; the subject plays
the game but the game plays the subject.

ADHD: Children

In the case of FSS’s, “Once a person is labeled as ill, he or she is regarded


and treated in ways that make recovery more difficult: Continued illness is
expected of that person, and symptoms therefore persist.”69 The same prin-
ciple applies elsewhere, however, and when the labeled person is a child the
suggestive effects of the diagnosis may be that much greater, especially if
the diagnosis is in vogue and the label socially reinforced at every level, as
with ADHD. Quite as if the label did in fact make recovery more difficult,
we are now told that a substantial percentage, possibly a majority, of people
diagnosed with ADHD as children will never outgrow it. They will become
ADHD adults.
How might the ADHD label trigger a nocebo effect?
In other cases it’s been shown that subjects given labels imputing poor
cognitive ability show the deficits assigned by the label when tested, while
controls don’t.

Stereotype threat research provides compelling evidence for the contribu-


tion of non-neurological factors to cognitive test performance. The assump-
tion behind stereotype threat is that a member of a particular group, when
faced with a task thought to be poorly performed by members of that group,
feels threatened by the inferiority stereotype, which is assumed to interfere
with his/her performance. While stereotype threat was initially identified as
OVERDIAGNOSIS AND ITS HARMS 111

a factor contributing to observed cognitive differences between racial/ethnic


groups, it has also been shown to affect cognitive performance in individuals
from low socioeconomic backgrounds, has been implicated as an explana-
tion of sex differences in cognitive tasks, and has been suggested as an expla-
nation for cognitive decline in aging.70

I see no reason to believe that stereotype threat—another principle capable


of many applications—doesn’t pertain to the charged stereotype of ADHD.
In addition to stereotype threat the cited authors discuss “diagnosis
threat”: the noxious effect of a diagnostic label even if the condition in
question overlaps normality. (Thus, subjects falsely advised of the lingering
effects of mild head trauma fare worse on cognitive tests than controls with
the same history.) In contrast to members of an ethnic group or a social
class, an ADHD child is exposed to diagnosis as well as stereotype, and
in either case it’s possible to fall into the trap of living out the imputed
identity. After all, the belief that we have a disorder prompts a search for
confirming signals, and when the signals are as common and ambiguous as
inattention or unruly behavior, confirmation will not be lacking. A number
of DSM symptoms of ADHD, such as “difficulty remaining focused during
lectures” or a dislike of “completing forms,” are so perfectly commonplace
that you might question the normality of people who didn’t show them.
If ADHD didn’t broadly overlap normality, a study of no fewer than one
million Canadian children wouldn’t have found that boys born in Decem-
ber were 30 percent more likely and girls born in December 70 percent
more likely to be diagnosed than their January counterparts, evidently for
the simple reason that they’re the youngest in the class.71 In that no one is
going to run a trial where children are given ADHD diagnoses according
to their birthdays in order to track the outcomes, these correlations illus-
trate the point that everyday diagnostic practices are shielded from testing
by their very dubiousness.
The stimulants prescribed for children with ADHD are known drugs of
abuse and are sometimes taken by college students, even medical students,
in the belief that they improve performance on exams. A double-blind,
randomized but small study found no difference in cognitive performance
between students given methylphenidate and given placebo. However, just
as studies of acupuncture show no difference between the procedure and
placebo but a marked difference between results reported by those who
expect benefit and those who don’t, the cognitive-performance study found
that those in either group who believed they received the drug did better
than those who believed their pill a placebo.72 In other words, the expecta-
tion of cognitive benefit seemed to matter in and of itself—a principle con-
sistent with the placebo literature as a whole. Expectation is such a potent
112 THE NOCEBO EFFECT

force that in a carefully designed experiment, cocaine abusers who expected


to receive methylphenidate showed a greater metabolic response than those
who expected placebo.73 But expectations aren’t limited to drugs, and those
induced in a child by the ADHD label are also potent, all the more because
they are reinforced every day with the habituating effect of life itself. Many
children have been taking ADHD medication from so young an age that they
can’t remember not taking it.74 What if they absorb the diagnosis of ADHD,
along with the message that they suffer from a fundamental defect of self-
regulation, as completely as they absorb the practice of taking medication?
Children may buy into the ADHD message so fully that they deem their
ordinary state pathological. Thus, in a British study where children were
interviewed about what it was like to take a stimulant for ADHD, they typi-
cally said that on medication they felt normal. “This state was contrasted with
‘acting crazy’ or ‘being really weird’ when they were not on medication.”75
An interesting study reported in 2007 looked into the possibility of
openly substituting placebo for part of the medication of 70 children,
aged 6–12, being treated for ADHD.76 The observed fact that children on
ADHD medication often respond well to a change in their stimulant, or
to another formulation of the same stimulant, led some to theorize that a
placebo effect was at work and that placebo might, therefore, replace medi-
cation in part. The study in question, which ran for a total of three weeks,
tested this theory (using placebo as a Dose Extender) and found that “most
parents reported treatment benefits and 80% of the children found the pla-
cebo to be useful. Full disclosure of the placebo to parents and children did
not appear to negate the placebo’s effectiveness.”77 Set aside the improbable
notion that children as young as six could somehow process the paradox
that the pill they were given contained no medicine. (If the idea was to
see if dosage could be reduced without loss of efficacy, the experimenters
could have tested an alternate-day pill regimen, an arrangement that would
have been completely transparent.) If we read the study critically, the ques-
tion presents itself: What’s the benefit of cutting down on the medication
the children receive unless it’s potentially harmful? But if it is potentially
harmful, then care should be taken with the diagnosis of ADHD, which is
after all the trigger for medication. The study report begins by noting that
“prevalence estimates [for childhood ADHD] range from 3% to 12%,” a
gaping disparity that ought to be a warning that the disorder represents
yet another dubious frontier of medical expansionism. If the overuse of
stimulants for ADHD raises concern, as the authors acknowledge,78 what
does this mean but that ADHD is being diagnosed indiscriminately? So
much Ritalin and Adderall is in circulation that high school students are
known to sell it. Is diluting medication with placebo really the remedy for
the overprescription of stimulants?
OVERDIAGNOSIS AND ITS HARMS 113

As published studies so often do, this one yielded a positive result. In


keeping with the principle that “placebo effects may be greatly enhanced
by positive expectancy,” the study set up expectations of therapeutic benefit
that were duly realized. The authors themselves recognize that the children
and parents could have reported improvement to gratify them, a risk built
into every open-placebo trial. Another explanation for the reports, one
also acknowledged by the authors, is that the study “caused parents to be
more attentive” to their children, quite as if the adults had attention deficits
of their own. But suppose the sham medication did somehow work via the
power of expectation. If expectations can shape experience, what of those
generated by an inflated diagnosis of behavioral disorder? Might not the
six-year-olds who receive such a diagnosis begin to live it out by behav-
ing accordingly? The self-confirming nature of the study, whereby children
who were primed to believe a Dose Extender could help them reported
that very result, bids us think carefully about the way our practices can
reinforce themselves for better or worse. If nocebo weren’t the other side
of the placebo effect, and similarly in play, parents wouldn’t note improve-
ment in an ADHD child’s behavior when starting a new medication, only
to find that the drug seems to lose efficacy as the heightened quality of the
parents’ attention to the child degrades over the weeks.79
Say I’m a child with some symptoms of ADHD, which are surely as
ubiquitous as those of the adult variety. My doctor, teachers, and parents
tell me I have ADHD, I take medication for it, it leaches into my under-
standing of myself and others’ understanding of me. At some point, amid
all this reinforcement, I begin to conform to my label. (After all, with
episodes of inattention and restlessness being normal in childhood, my
diagnosis is continually confirmed.) Unlike a subject in a short clinical
trial who picks up side effects of a drug or placebo from a list, I develop
a history with my condition, learning over time what it is to perform it
socially, incorporating it into my conception of self just when I’m form-
ing such a conception. Every pill I take confirms my identity as an ADHD
child. On the playground I get into fights over my diagnosis. Having
been diagnosed in preschool, I can’t even remember a time when I didn’t
wear the ADHD label. Over the years, as my disorder fails to disappear, I
acquire the sense that I have a disability so fundamental it calls for medi-
cation indefinitely, though even that can’t repair it. By this time if not well
before, my label has come to life. The noxious potential of medical labels
applied to children is strongly suggested by a study that found that chil-
dren misdiagnosed with heart disease suffered deficits of “intellectual and
perceptual motor function” as compared with controls, no doubt because
they were somehow treated by those who raised them as if their hearts
were damaged.80
114 THE NOCEBO EFFECT

The social underpinnings of ADHD may bear on the results of the nota-
ble MTA trial (Multimodal Treatment Study of Children with ADHD), in
which ADHD treatments including an intensive medication regimen and
ordinary care were run against each other but not against placebo, so that
the placebo effect was built into the results. Though most in the ordinary-
care group were also taking stimulants, children receiving medication as
part of the study protocol showed better results at 14 months, and the text
of the study suggests why. Those randomized to the medication group had
a degree and kind of medical attention that transcended routine care. For
example, “during half-hour monthly medication visits, pharmacotherapists
provided support, encouragement and practical advice,” as well as adjusting
the child’s medication if necessary.81 So closely was the medication group
monitored that their saliva was tested. Whereas children and families who
refused treatment were “encouraged to reconsider their decision throughout
the study,”82 those who did take part were under careful, continuous observa-
tion that heightened compliance with the protocol and in all likelihood was
therapeutic in itself. When the protocol came to an end after 14 months and
the study became “naturalistic,” the superior results of the medication group
began to decay; by two years they had halved and by three years vanished.83
While difficult to interpret, the narrative of lost efficacy suggests that as the
elaborate ritual structure supporting the medication collapsed, the value of
the medication sank with it. The subjects took their stimulant less religiously
and their outcomes ceased to show any relation, except possibly a nega-
tive one, with pill intake at all. The MTA story reminds us that ADHD is as
much a social as a biomedical construct, and that offstage factors including
the character of care may have much to do with the efficacy of the pills that
engross public attention. The authors of a three-year follow-up on the MTA
trial offer the Tolstoyan conclusion that the improvement over baseline seen
in all treatment groups despite the waning differences between them may be
due to nothing more or less than the passage of time.84
Some consider that the placebo effect operates by something like a self-
fulfilling prophecy, as when a subject led to expect saline to act like a pain-
killer enjoys that very outcome.85 If a message can activate a neutral solution,
what of a message delivered to a child every day with his ADHD medication
and reinforced by one and all? That this could contribute to badly regulated
behavior is no remote possibility. A paper in American Psychologist by no
means critical of ADHD as a diagnostic category concedes that

the messages that attend stimulant therapy may be beneficial, enhancing the
child’s sense of accomplishment and self-perceived efficacy and diminish-
ing parental feelings of guilt and futility. Or, the effects may be unsalutary,
confirming preexisting assumptions that the child is and will remain unable
OVERDIAGNOSIS AND ITS HARMS 115

to take control of his own behavior without external aids and constraints . . .
Until more information is available about such effects, as well as about long-
term outcomes and individual differences, the best clinical strategy would
appear to be one of judiciousness and caution.86

Judiciousness and caution are exactly the restraints swept overboard by


the diagnostic zeal of the movement that has made ADHD a household
word. By now, a good deal is known about the eventual outcomes of diag-
nosed ADHD, and the data suggest that a British psychiatrist was right to
warn that children diagnosed with the disorder “may absorb the unhelpful
message that they cannot control their own behaviour without the use of
drugs,”87 although the word “unhelpful” is euphemistic.
In addition to a markedly higher risk of death, an ADHD diagnosis is
associated in follow-up studies with a list of bad outcomes from dropping
out of school to loss of jobs to car accidents. Thus, “few people with ADHD
enter college . . . and of those who do, only 5% actually graduate . . . By their
30s, 35% of people with ADHD are self-employed . . . Drivers with ADHD
lose their licenses at a rate 3 times that of other drivers.”88 The compiler of
these bleak statistics maintains that ADHD springs from a neurological
defect of self-regulation, but given that this defect is entirely speculative,
that most ADHD cases appear to fall in the mild to moderate range,89 and
that many investigators doubt that ADHD is even a single entity90—given
all this, it’s at least equally possible that the subversive message sent by
the diagnosis impairs the practice of self-regulation. It’s easier to do harm
when unaware that harm is a possibility, and the article that recites the
statistics just quoted never considers that ADHD might be overdiagnosed
or asks what the consequences of poor diagnosis might be. (Neither does it
say or imply that children who receive medication for ADHD enjoy better
long-term outcomes than those who don’t. It doesn’t mention medication
at all.) Parents informed of the well-documented outcomes of the diagnosis
might feel differently about having their child labeled with ADHD. Did the
experimenters who used placebo openly as a Dose Extender discuss this
information openly with parents or keep it to themselves?
Over three hundred years ago the physician John Locke wrote, “He that
has found a way, how to keep up a Child’s Spirit, easy, active and free; and
yet, at the same time, to restrain him from many things he has a Mind to,
and to draw him to things that are uneasy to him; he, I say, that knows how
to reconcile these seeming Contradictions, has, in my Opinion, got the true
secret of education.”91 Has understanding advanced in the interim? Using
a stimulant to calm a child represents a biomedical attempt to resolve a
problem that resists such a facile solution. The evidence of eventual out-
comes across a range of indicators suggests that growing up in the belief
116 THE NOCEBO EFFECT

that you can’t regulate yourself without methylphenidate does not promote
and could undermine the practice of self-control. If screening programs
“potentially influence our self-concepts . . . and offer a new form of social
penetration of our private emotions,”92 how much more is this true of a
diagnosis received in childhood and reinforced daily for years on end.
Medical thinking duly cautious of harm wouldn’t fail to factor this risk into
the evaluation of the ADHD diagnosis.
According to DSM-III-R (1987), ADHD “is common; it may occur in as
many as 3% of children.” The commonness of ADHD has since shot up to
the point that it’s now estimated that 11% of American children, and nearly
20% of American boys, will be diagnosed with ADHD by the age of 17.93
That’s what medicalization comes to.

Erectile Dysfunction

Among the conditions newly framed as problems subject to medical


management is erectile dysfunction, perhaps a less frightful label than
“impotence,” but one that makes any deviation from a notional standard
equivalent to an actual disorder. I’ve suggested that the medicalization of
normal conditions opens possibilities of harm—in the case of childhood
ADHD, not only the harms attending the use of psychoactive drugs by
children but those stemming from the self-reinforcing effect of a highly
suggestive and catchy medical label. What harm, then, could attach to the
label, “erectile dysfunction”?
Not long after it was adopted, Viagra hit the market. But much as ads
for social-anxiety drugs play on anxiety, the marketing of ED medications
called for men in the millions to be worried about ED. The results of a
study that has made a strong impression on the placebo literature suggest
how noxious such a worry can be and how little is required to provoke it.
Struck by the disparity between reported rates of sexual side effects
associated with finasteride (used to treat enlargement of the prostate
[BPH]) and the higher rates observed in clinical practice, researchers in
Italy devised a study to account for it. One hundred twenty middle-aged
men diagnosed with BPH were randomly divided into two groups, one of
which received finasteride described only as a “compound of proven effi-
cacy for treatment of BPH,” while the other received the drug along with
the advisory that “it may cause erectile dysfunction, decreased libido, and
problems of ejaculation, but these are uncommon.” At one year, each of
these adverse events occurred about three times more often in Group II,
with erectile dysfunction leading the list—no less than 30.9 percent of men
in Group II reported it. Just as a consent form in a clinical trial can cue
the experience of side effects even in a placebo group, so the “counseling”
OVERDIAGNOSIS AND ITS HARMS 117

received by Group II prompted these patients to experience at a high rate


the very troubles they were advised of in a reassuring way, troubles they
undoubtedly hoped to avoid. In total, no less than 43.6 percent of the
advised men reported one sexual dysfunction or another, compared with
15.3 percent of men in Group I—such was the magic of the right word.94
Note that over the course of the study, the statement that adverse sexual
effects of finasteride are uncommon became untrue. The findings compli-
cate any proposal to use finasteride as insurance against the overdetection
of prostate cancer as a result of PSA testing, as some recommend.95
As investigators of the nocebo effect point out,

Patients who expect distressing side effects before taking a medication are
more likely to develop them. Such negative expectations make the individual
more likely to notice and attend to new or unwelcome sensations; interpret
preexisting, ambiguous, and vague sensations unfavorably and attribute
them to the medication.96

So it is that the men in Group II underwent the same experiences as those


in Group I as if under triple magnification. In the case of consent forms,
too, nocebo effects may well represent distortions of ordinary events rather
than outcomes that materialize out of thin air, though a consent form isn’t
designed to elicit side effects. The finasteride experiment was so designed,
except that the men in Group II were assured that the adverse events were
rare. So strong were the anxieties triggered by the advisory language in the
study script that one or more of the supposedly rare events were reported
by almost half of the men in the advised group—men admitted into the
study only if they had no preexisting sexual dysfunction. Precisely as
a study of the nocebo effect in action, the ED experiment speaks to the
harmful potential of self-scanning for troubling signs. It bears emphasis
that all the experimenters did to triple the incidence of dreaded side effects
was to make subjects aware of the low possibility of their occurrence.
As I write, the power of anxiogenic messages is being dramatized in a
series of lawsuits filed against Merck, alleging that men all over the United
States are being left sexually impaired and miserable by the use of the same
drug, finasteride, in a 1-mg dose to prevent hair loss. Cited in the pub-
licity as side effects of Propecia, in addition to sexual harms, are depres-
sion, anxiety, “mental fogginess,” and even prostate cancer—a list strongly
suggesting that the lawyers are fishing in the pool of common symptoms.
As if trying to leverage anecdote into reality, the lawsuits cite a study that
cites European regulatory notices that cite reports of “persistence of erec-
tile dysfunction after discontinuation of treatment with Propecia.” As for
the study itself, it tested no interventions; lists among its own limitations
118 THE NOCEBO EFFECT

a post hoc approach, selection bias, and recall bias; admits that subjects
were recruited from one of the authors’ practices and from a Propecia help
forum; and notes that subjects attributed to the drug not only their sexual
complaints but miscellaneous problems from fatigue to “cognitive difficul-
ties.”97 The reason blinded, placebo-controlled trials are run in the first
place is to correct for the biases and loose causal attributions built into this
study.98 Information about Propecia is thus falling into the same pattern of
repetition and exaggeration seen in other syndromes, with the difference
that in this case the cause of the alleged epidemic has already been identi-
fied. Given that noninflammatory consent language alone can increase the
side effects of finasteride, it’s entirely possible that the scare stories now
surrounding Propecia can do the same or worse.
In this matter we might take advice from Montaigne’s essay “On the
Power of the Imagination,” much of which is devoted to the topic of impo-
tence. According to Montaigne, a fear that has become exceptionally
vivid, that takes command of the imagination, is enough to bring on this
affliction.

I am of the opinion that those ridiculous attacks of magic impotence by


which our society believes itself to be so beset that we talk of nothing else can
readily be thought of as resulting from the impress of fear or apprehension.
I know this from the experience of a man whom I can vouch for as though
he were myself: there is not the slightest suspicion of sexual inadequacy in
his case nor of magic spells; but he heard one of his comrades tell how an
extraordinary impotency fell upon him just when he could least afford it;
then, on a similar occasion, the horror of this account struck his own imagi-
nation so brutally that he too incurred a similar fate.99

The horror stories about Propecia now in circulation echo the tales of
magic impotence that coursed through Montaigne’s world, at once base-
less and potentially effectual. The deep but skeptical interest in mind-body
transactions at work in “On the Power of the Imagination”—an interest
that leads Montaigne to reflect on the grounds of his own knowledge—is
akin to the attitude inspiring the study of placebo and nocebo effects today,
just as Montaigne’s fascinated but not credulous reports of exotic practices
resemble the reserved judgments of the nocebo literature regarding such
practices as voodoo death.

Adjustment Disorder

Given the multitude of studies where patients serve as the subjects, it seems
poetically just that researchers turn the tables now and then, putting doctors
themselves under investigation. Notable among these studies-in-reverse is
OVERDIAGNOSIS AND ITS HARMS 119

the simulation published in JAMA in 2005 wherein actors playing some-


one with either Major Depression or “adjustment disorder with depressed
mood” consequent on the loss of a job saw family doctors and general
internists with requests for a named antidepressant, requests for unnamed
medication, or no request at all. In the event, the doctors prescribed anti-
depressants at a higher rate (55 percent) if patients asked for the brand
name, Paxil, than if they asked simply for a medication (39 percent). Doc-
tors themselves, it seems, can be influenced indirectly by DTC advertising.
(At the time of the study fluoxetine was available as a generic, and half-way
through the study Paxil itself became available in generic form.) Further-
more, the doctors responded at a higher rate to requests for Paxil com-
ing from pseudo-patients with an adjustment disorder that wasn’t really a
medical matter than from those with Major Depression.
According to the study authors, the finding “supports the hypothesis
that DTC advertising may stimulate prescribing more for questionable
than for clear indications.” It’s as if the dubious condition of adjustment
disorder required a boost from the world of advertising to achieve clinical
significance. (So generic is “adjustment disorder” that doctors have been
known to use it for insurance purposes in cases where they choose not to
record a truthful diagnosis.)100 Having recently accepted a voluntary lay-
off rather than move with their company to another state—so the cover
story went—the pseudo-patients exhibiting “adjustment disorder” were
now under stress, feeling fatigue, and having difficulty falling asleep. In
other words, and as the authors of the study point out, they had little wrong
with them.

Standardized patients randomized to portray this condition presented


with insomnia and fatigue of short duration and with few signs of cogni-
tive, somatic, social, or functional impairment. Without prompting, physi-
cians examining these SPs were unlikely to prescribe an antidepressant . . .
Although several small trials suggest that antidepressants confer modest
benefits on patients with minor depression, there are no data to support
their use in adjustment disorder, especially when characterized (as in our
study) by a clear precipitant, mild symptoms, and short duration. Thus . . .
the prescription of antidepressants in this context is at the margin of clinical
appropriateness.101

Though Paxil is among the more poorly tolerated drugs of its class,102
nowhere in the study in question do the doctors mention or appear to con-
sider the known effects of the drugs they prescribe for adjustment disorder.
Still more disturbing is the assumption that adversity constitutes a clini-
cal problem in the first place and that life itself is appropriately subject to
medical management.
5

Name Games

The Mystique of Specificity

Contrary to the understanding of symptoms as manifestations of disease,


a number of puzzling syndromes have taken shape over recent decades in
which distressing symptoms can’t be traced to any physical cause—among
them irritable bowel syndrome, chronic fatigue syndrome, and fibromyal-
gia. Despite their labels, however, these disorders are broadly similar, and
many of their symptoms, even cardinal ones, overlap. The disorders’ inde-
pendence of one another appears to be an illusion, an “artefact of medical
specialisation,”1 which is also to say that they are supported in some way by
the mystique of specificity despite lacking specificity itself. And the same
is true of a number of disorders that present less controversy and vexation
to medicine.
Depression, for one, would seem to be a well-defined, specific disorder,
as opposed to the vernacular condition of sadness, to say nothing of the
strangely unbounded malady once known as melancholy. The “selective”
serotonin reuptake inhibitors are so called because they target the allegedly
specific biochemical cause of depression. The allure of Prozac, the first of
these to hit the market, lay less in its actual effects than its repute of specific-
ity, which was in turn founded on “the belief that it was a ‘smart drug,’ in
which a molecule was designed with a shape that would enable it specifically
to lock into identified receptor sites in the serotonin system—hence affect-
ing only the specific symptoms being targeted and having a low ‘side effect
profile.’”2 Every element of the Prozac belief-system proves to be misleading.
The superiority of Prozac to placebo is much exaggerated, the placebo effect
itself appears to stimulate serotonin,3 the side effects of Prozac are nontrivial,
and depression is not a specific disease with a targetable cause but a con-
struct framed so broadly that Prozac can be prescribed to almost anyone.
As if a blueprint for popularity were being followed, the successor
malady bipolar disorder—depression plus the opposite—is now being
122 THE NOCEBO EFFECT

marketed in the same way as depression. In both cases inclusive definitions


are crafted, people caught in life’s vicissitudes are diagnosed as disordered,
prevalence estimates shoot up, a literature is born, awareness campaigns
are staged, quizzes published, the intuitive notion of equilibrium tapped
(“mood stabilizer,” “chemical imbalance”), risk/benefit ratios distorted,
adverse effects muted, children drugged.4 It’s as if specificity resided not in
the disorders themselves but the series of steps necessary to bring them to
full social existence. The packaging and advertising of a disorder as a medi-
cally specific entity seem to be key components of this elaborate process.
What accounts for the peculiar power attached to the names of condi-
tions and even the medications used to treat them? To many, Bayer aspirin
seems superior to common aspirin, and just as a trade name has powerful
resonances and connotations, so does specificity per se. Only when it was
shown that diseases were caused by specific microbes did one after another
become—for the first time in the long stumbling history of medicine—in
principle controllable. Tuberculosis, diphtheria, typhoid, and many other
scourges, all yielded up their secrets. “In the twenty-one golden years
between 1879 and 1900, the micro-organisms responsible for major dis-
eases were being discovered at the phenomenal rate of one a year.”5 It was
at the end of this epoch, which was also the end of a century, that Bayer
named its wonder-drug Aspirin. (Bayer was headquartered in the world
capital of medical discovery and former world capital of romanticism,
Germany.) Insofar as they play on the prestige of specificity, then, labels
for constructs like ADHD, social anxiety, or bipolar disorder carry traces
of the story by which medicine acquired a long-dreamed-of power and
became a vehicle of human hope.
Precisely because it designates something specific, such a label seems to
have the reputation and authority of medicine behind it. Depression, too,
has been established in both medical thinking and common parlance as
a specific entity, and yet before DSM-III its diagnostic criteria sometimes
listed sleeplessness and sometimes too much sleep as well; sometimes loss
of appetite, sometimes increased appetite as well; in one case listed con-
stipation, otherwise didn’t; sometimes listed guilt, sometimes didn’t; in
one case emphasized the fear of losing one’s mind, otherwise never men-
tioned it; sometimes cited decreased sexual interest, sometimes spoke only
of interest in general.6 As noted in a paper on the symptoms of manic-
depressive disease that anticipated the Feighner criteria by 15 years, “It is
still true that the cause of the illness is not clear, that its diagnosis is inexact
and frequently missed, that the mechanism of the symptoms is not known,
and that the treatment is still uncertain and a matter of debate.”7 It’s as
if a determinate category took on the contours of an ink blot. The cause
of depression—assuming it’s a single entity—is still unclear, despite the
NAME GAMES 123

heavily promoted theory that it results from a neurotransmitter deficiency.


A case can be made that the very term “antidepressant” is a triumph of
misleading advertising, denoting as it does a drug that corrects a particu-
lar chemical problem responsible for a particular disorder.8 So overplayed
are the benefits of SSRIs like Prozac and Paxil, and so diverse are their
side effects, that these drugs could also be portrayed—in direct opposition
to their advertising—as nuisances with the incidental effect of marginally
improving scores on a depression index.
In Germany as in other countries in recent years, the practice of sub-
stituting generic for branded drugs has spawned complaints from patients
and even doctors who believe the generics don’t work as well.9 But if people
prefer drugs whose brand names make them recognizable and seemingly
special, they may also find themselves attracted to a disorder like depres-
sion whose clinical name—instantly recognizable and connotative, like a
brand—seems to distinguish it from common complaints and ordinary
sadness.
As tokens of specificity (whether or not that quality exists), labels are
instrumental in the process of medicalization and contribute to its appeal
and its harms. The entire placebo/nocebo literature testifies to the power of
suggestion, and labels can be highly suggestive. Even branding—and Aspi-
rin itself was originally a popular brand name—may have a certain nocebo
as well as placebo potential.

Aspirin and Headache

As one example among many of the preferential interest in the placebo


effect shown in the medical literature, consider a well-known study of
the therapeutic value of branding published in 1981. Randomly assigned
to receive either placebo labeled as “analgesic tablets,” placebo labeled as
branded aspirin, aspirin labeled as “analgesic tablets,” or branded aspirin,
some eight hundred women in the UK were asked to record the severity of
their headaches over a two-week period as well as the relief obtained. In
an elegant demonstration of the power of the placebo, the authors found
the branded tablets more effective than unbranded equivalents in reliev-
ing headaches, so that not only did branded aspirin outperform its generic
counterpart, but branded placebo did as well.10 Presumably the brand
name in question raised expectations of efficacy that were then reflected
in some way in the pill-takers’ experience. (It should be noted, however,
that identical percentages of branded and unbranded aspirin consumers
reported themselves “completely better” after one hour.) Evidence suggests
that when doctors prescribe placebos, they favor pills with a semblance
of medical legitimacy over the likes of sugar pills,11 and that among those
124 THE NOCEBO EFFECT

commonly prescribed are over-the-counter analgesics.12 Suppose, then,


that a doctor seeking to tap the placebo effect without resort to the decep-
tion so often employed in placebo research (including the branding study)
considered recommending brand-name analgesics.
In view of another finding of the same study, such a recommenda-
tion would be ill-advised. As it happens, the takers of branded pills also
reported more headaches, of equal severity, with the most being reported
by the branded-aspirin group—ironically, the same group that enjoyed
the highest relief. (Thus the branded-aspirin takers recorded an average
of 2.15 headaches, as compared with 1.92 among the unbranded-aspirin
takers, a difference significant at the 5 percent level. The numbers in the
placebo group are very similar.) Why recommend an analgesic associ-
ated with more headaches? And yet this surprising, not to say perverse,
result of branding has received little comment in the placebo literature,
which tends to read the study simply as a confirmation of the placebo
effect. In an excellent survey of the placebo phenomenon, for exam-
ple, the findings of the branding study are summarized thus: “Results
showed that branded aspirin was the most effective, followed by the
unbranded aspirin, then by branded placebo, and finally by unbranded
placebo.”13
The study outcomes suggest that headaches somehow rose to the level or
presumed level of their treatment, although how and why remain unclear.
The authors theorize that “in the absence of other indications the differ-
ence in the number of headaches between the groups given branded and
unbranded preparations may suggest that subjects were more willing to
take the branded tablets because they were well known.” But why did they
have more headaches in the first place? An increase in headaches would
make sense if we were subject not only to headache per se but ambiguous
experiences that might or might not qualify, and if the confidence inspired
by a brand name led us to interpret more of these episodes as headaches
(in effect, to lower the threshold) in the belief that the pill could manage
them. After all, it’s improbable that the brand name caused headaches but
not improbable that a pill could somehow heighten awareness of your own
sensations—a well-recognized mechanism of symptom amplification. In
short, the branded aspirin may have increased attention to ambiguous
events that weren’t attended to before. By analogy, imagine that a house-
keeper begins using a certain glass cleaner only to notice streaks on the
windows that formerly went unperceived just because they were always
present and called no particular attention to themselves.
There’s every reason to believe that among the ills of health are equivo-
cal sensations that might or might not be interpreted as headache. Pre-
sumably just because they have ambiguous experiences that can register
NAME GAMES 125

as headaches, many patients diagnosed with hypertension report the


headaches their diagnosis is wrongly thought to imply. (More on this
shortly.) Headaches exist in various shades and degrees. According to
one estimate, approximately 40 percent of the general population report
headaches of “more than a little” intensity.14 Just as the language of the
branded-aspirin study draws obscure distinctions between being “quite
a lot better” and being “considerably better,” so headaches of more than
a little intensity could well allow for borderline experiences subject to
different interpretations. A study of the connection between common
symptoms and diagnosed depression found that 36.4 percent of surveyed
primary-care patients reported headaches—but of ungraded severity. 15
Also suggestive is a survey of a healthy population of volunteers (cited
in Chapter 2) of whom only 19 percent reported experiencing none of 25
specified symptoms in the preceding 72 hours.16 Anyone who had taken
a drug over the three-day period was disqualified from the study, includ-
ing 53 subjects who had taken aspirin and listed headache as an experi-
enced symptom. Even so, about 15 percent of the qualifying population
of 414 reported headaches. That headaches in this study came in different
grades, some treated with aspirin and some not, seems consistent with
my suggestion that common somatic events might or might not be inter-
preted as headache at all.
The power of the placebo to banish headaches today and attract them
tomorrow is borne out but passes unnoticed in Beecher’s seminal 1955
paper on the placebo effect. Among the studies cited by Beecher is one
conducted in 1946 where 52 percent of patients with headache were sat-
isfactorily relieved by a placebo, in this case lactose. Elsewhere, though,
in calling attention to the adverse effects of placebo Beecher cites studies
where 23 of 92 subjects reported headaches.17 Implicitly, he reminds us of
the double-edged nature of the placebo, and the co-possibility of placebo
and nocebo outcomes despite our bias toward the first.

Branding and Cancer Awareness

In 1969, when the head of the American Medical Association’s Council on


Drugs suggested in a radio broadcast that doctors ought to prescribe drugs
by generic names so that consumers could choose among different brands
just as they choose their oatmeal, an outraged listener wrote as follows:

“Just like oatmeal.” This statement will result in good physicians using infe-
rior drugs that might not even work to save your patient’s lives [sic]. Oatmeal
indeed—and for your information, I always buy “Quaker” oats and I bet you
do too. If not you deserve the mush you might get.18
126 THE NOCEBO EFFECT

Where did this sort of attachment to branding as the seal of probity


come from?
Sometimes we catch a glimpse of a manufacturer working to associate a
brand with the public good, as when the maker of Paxil posed as a benevo-
lent third party informing the world about a matter of general concern:
social anxiety disorder. In America of the last century the advertising of
products and the promotion of causes sometimes went hand in hand, and
the man who perhaps as much as anyone styled our public realm applied
to each the methods of the other. Not only did he promote Ivory soap and
myriad other brands, he identified his labors with progressive ideals and
public hygiene; characteristically, he managed to associate even Lucky
Strikes with something allegedly modern and forward-looking—women
smoking. Deeming his way of working on the public mind a practice far
more enlightened than advertising, he called his art public relations.
Edward Bernays (1891–1995) was Freud’s nephew twice over, his
mother being Freud’s sister, and his father’s sister Freud’s wife. In his self-
appointed role of therapist-general to the American public, Bernays under-
took to emancipate consumers from outdated attitudes and win them over
to the modern, which meant, in his phrase, “engineering consent.” Acting
by preference through others—an indirection that made advertising seem
crude by comparison—he raised awareness about venereal disease, did bat-
tle with sexual hypocrisy, and promoted Lithuanian independence, racial
equality, Cartier jewels, salad dressing. As an advance man for Caruso and
the Ballet Russe he fostered the cult of celebrity that still reigns. His traces
are indeed everywhere, from the professional tailoring of the presidential
image (Bernays spruced up Calvin Coolidge) to the therapeutic content of
television to the subculture of the facilitator, a role he practically invented.
If ads playing up SAD don’t necessarily mention Paxil, Bernays once staged
a colossal celebration of the light bulb without mentioning General Elec-
tric.19 When pharmaceutical companies ghostwrite medical papers, using
influential doctors (“key opinion leaders”, or KOLs) to steer the choices of
other doctors, they follow in Bernays’s footsteps.20
Say a toothpaste manufacturer (X) is up against a competitor (Y) that
aggressively proclaims the superiority of its product and dominates the
marketplace. If Bernays were hired by the underdog, what would he do?
Company Y’s boasting reads to Bernays like a sign of weakness—a reli-
ance on crude methods, a lack of originality. The point isn’t to sing your
own praises but to get respectable others to sing them. Bernays therefore
gives X “the weapon of propaganda which can effectively, through vari-
ous channels of approach to the public—the dental clinics, the schools, the
women’s clubs, the medical colleges, the dental press and even the daily
press—bring to the public the truth of what a toothpaste can do.”21 By the
NAME GAMES 127

astute use of reputable third parties to promote appreciation of the health


benefits of toothpaste—benefits it simply attaches to its own product—X
overcomes its dominant competitor. The tale is all at once a David and
Goliath story and a modern fable of the mobilization of a new form of
power. Note, though, that X’s success in the marketplace has nothing to do
with the actual composition of its toothpaste; the testimonials Bernays has
conscripted speak simply to what “a toothpaste” does for us.
The Bernays method survives in full strength in the organization of health
crusades. When awareness campaigners undertook to popularize mass
screening for prostate cancer beginning in the late 1980s, the operations they
mounted followed the same model of using many channels and avenues to
“bring to the public the truth,” or the carefully edited truth, about the matter
at hand. Wheels were set in motion, newspapers and other media mobilized,
influential figures called upon; identical messages poured forth from many
places, and emblems, slogans and colors were adopted, much as if awareness
itself were being branded. (Prostate cancer became blue; Bernays once pro-
moted green.) In 1993 “the department of public relations at the University
of Colorado Health Sciences Center assumed the responsibility of sustaining
the national media effort,”22 and so the torch of prostate cancer awareness
passed into the hands of Edward Bernays’s colleagues.
The resemblance between the promotion of cancer awareness and the
promotion of toothpaste is nontrivial. The prime mover of the war on can-
cer, as it came to be called, was Mary Lasker, whose husband Albert was
an innovator in advertising whose clients included Pepsodent toothpaste.
Mary Lasker argued in the 1940s that “if a toothpaste . . . deserved advertis-
ing at the rate of two or three or four million dollars a year, then research
against diseases maiming and crippling people in the United States and in
the rest of the world deserved hundreds of millions of dollars.”23 With the
advice and cooperation of her husband (who like Bernays lent his services
to Lucky Strikes), she set about mobilizing opinion leaders and raising
funds on behalf of cancer research, employing essentially the same tac-
tics Bernays had been using to get things done since the 1920s. It was the
Laskers who transformed the American Society for the Control of Cancer
into the American Cancer Society, a rebranding operation in itself. Much
as Bernays worked behind the scenes, out of sight of a public whose gaze
was fixed on more charismatic figures, so did Mary Lasker lobby for the
war on cancer eventually declared by President Nixon in 1971. One of the
characteristic operations in that war came to be the awareness drive, as
when Gen. Norman Schwarzkopf, hero of the Gulf War and prostate cancer
veteran, brought the message of screening to American men in the 1990s.
At some point the question arises, is an awareness drive that resembles
a campaign to establish a brand a good idea?24 A candid appraisal of the
128 THE NOCEBO EFFECT

impact of the first decade of Prostate Cancer Awareness Week, written by


a member of the council that launched it, brought out the harms of this
massive endeavor. Perhaps “simply as a natural response to effective pro-
motional efforts,” countless men misinformed about prostate cancer under-
went screening, thereby “entering a process that may adversely affect their
perceptions of self, their wise and effective use of the health care system,
and their long term quality of life.”25 If medicalization in general subjects
normal conditions to the risks of treatment, the advertising of PSA test-
ing across the United States under the civic banner of awareness created
the clear and present possibility of perverse outcomes. By the time of the
retrospective assessment of PSA testing just cited, more than three million
American men had been screened; the practice had been institutionalized.
This couldn’t have happened unless a highly ambiguous condition had been
branded as the all-too-specific entity, cancer.

Labels and Expectations

The power of labels is brought out by the chair of the DSM-IV Task Force
in a discussion of three late-nineteenth century medical fashions, one of
which enlisted William James. Of hysteria, multiple personality, and neur-
asthenia, Allen Frances writes,

Each was a different way of labeling and pretending to understand otherwise


confusingly nonspecific human suffering. None turned out to be useful; in
some ways all were harmful . . . But the labels flourished for decades because
they sounded convincing, stood on the high authority of the emerging sci-
ence of neurology, were promoted by charismatic thought leaders [notably
Beard and Charcot], and met the human need for explanation.26

Certain medical labels, it seems, exert an unusual if misleading power. If


depression couldn’t have reached epidemic levels without pills on the mar-
ket to treat it—certainly millions aren’t going to line up for electroshock
therapy, whose success in curing depression was proclaimed in the first
medical paper to lay out diagnostic criteria for it27—equally implausible is
the notion of people manifesting four or fourteen personalities if the disor-
der had no name, no mythology, and no promoters. (See below.)
Labels are more than markers or identifiers: They also seize attention
and arouse expectations—the label of cancer, for example, setting up a
presumption that the identified abnormality will inevitably grow and
worsen, unless arrested. In turn, the goal of arresting cancer in its infancy
drives campaigns for mass screening and early detection. That the pub-
lic and the promoters of mass screening hold the same “linear model of
NAME GAMES 129

carcinogenesis”28—the model summed up in the label “cancer”—helps


account for uptake of the practice despite its demonstrated harms.
Like early-stage cancer, hypertension may be completely symptomless—
imperceptible to the person who has it—and yet once it’s diagnosed the
patient may experience such presumed symptoms as headache. In a
unique illustration of the suggestive power of labels, a study some 30 years
ago showed that many patients both understand and actually experience
hypertension as Hyper-Tension, a folk disorder caused largely by stress and
manifesting itself in telltale symptoms. Their concept of the disorder and
the signs by which it reveals itself, including such common ills as fatigue
and nervousness, traces back to an accident of homophony; because the
medical term for high blood pressure sounds like a word for being under
high stress or wound too tight, a lay syndrome came into being. “If this dis-
ease were called, for example, ‘Korotkoff ’s syndrome’ (after the man who
first described the sounds used to measure blood pressure), it would be
much less amenable to the social-psychological interpretations that were
used” to make sense of Hyper-Tension.29 The symptoms associated with
Hyper-Tension, as opposed to the largely symptomless disorder of hyper-
tension, speak to a label’s power to summon the experiences it seems to
require.
That diagnostic labels call intuitively for symptoms is a good reason
not to use them loosely. A person’s conceptual scheme may “generate the
expectation that all illnesses have names (e.g., flu) and symptoms (coughs,
running nose, etc.) and forge a representation whose identity consists of
both a label (hypertension) and symptoms (headache, etc.).”30 But even as
it gives internal events definition and salience, the act of organizing symp-
toms under a label can amplify ordinary ills into distress signals, trace them
to a presumed cause, and induce an expectation that the identified disorder
will behave in keeping with its cause and label. A records-based study of
the outcomes associated with different labels for similar fatigue disorders
concluded that as a result of its “suggestion of an untreatable pathologi-
cal process,” the label “ME” (the accepted term for CFS in Britain) “may
somehow render the patient less able to combat their [sic] symptoms and
disability than other labels.”31 A disorder with such a strong name can raise
strong expectations, and if the power of expectation is such that it can
convince the human body that injected saline is morphine (provided only
that it’s administered with proper messages and due ritual), it also has the
ability to influence our experience of illness. After all, expectation governs
nocebo as well as placebo events, despite the partiality of the medical lit-
erature for the latter.
The nocebo effect comes into play when a diagnosed condition is ambig-
uous, as those continuous with normality are likely to be, and yet its label
130 THE NOCEBO EFFECT

convinces the patient that it’s present in full force and its symptoms somehow
predetermined. Much as the information that a drug is going to be adminis-
tered can induce the drug’s side effects even if it’s not in fact given, and much
as the side effects of placebos in clinical trials often track those of the drug
under study as listed in consent forms—that is, anticipated side effects—so the
expectation that our symptoms will conform to a certain official pattern can
strongly color our experience, whether or not we have an investment in the
sick role. A named disorder, underwritten by medicine and validated by com-
mon practice, has a way of becoming real. Even though the diagnoses codified
in the DSM were wrangled over before being set down in print in 1980, over
the intervening decades most have come to be accepted as genuine entities.
Writes the former director of the National Institute of Mental Health, “Dur-
ing the development of DSM-III, the process of splitting larger clusters into
more specific disorders elicited substantial debate and disagreement, but these
disagreements have largely disappeared, not because of scientific progress, but
rather, I would argue, because the named disorders became passively accepted
and reified.”32 If the mystique of a name can so enchant professionals that they
forget that it was ever instituted by human beings, a name can also influence
patients to fill out a disorder by producing the sort of symptoms this strangely
reified agent seems to call for. This is all the more likely if patients tend to pres-
ent “symptoms that their physicians will find convincing.”33
As we know, even in a state of health there are plenty of symptom-like
events available as raw material for a diagnostic label to organize. In that
many of these are ambiguous and diffuse, more like uneasy sensations than
determinate entities, a label that summons them into prominence and
gives them definition can act as a signal-booster. A labeled disorder enjoys
the prestige of specificity, and under its influence symptoms themselves
can become more specific.
In order to be eligible for amplification, an event has to be identifiable
as a signal in the first place. Of the many healthy volunteers, including
medical students, who in one study checked a box indicating that they
recently experienced “irritability,” some might have interpreted the term
to mean short temper or crankiness and some an ill-defined state of over-
excitement akin to distraction or loss of concentration.34 Irritability in the
latter, medical sense is so nebulous that you might not identify it at all
unless presented with a ready-made label for it. Today, someone diagnosed
or self-diagnosed with “irritable” bowel may have symptoms little different
from someone who walks the streets without the diagnosis, while faulty
concentration may be associated with ADHD. The instant recognizability
of the ADHD label, a feature it shares with a brand name or popular logo,
serves to sharpen the outlines of symptoms or quasi-symptoms so prosaic
as to merge with normality. That in itself is signal amplification.
NAME GAMES 131

When we learn we have asthma—a less specific condition than com-


monly supposed—or for that matter ADHD, this isn’t like picking up an
extra bit of information; it’s gaining information that becomes part of who
we are, that can change our self-understanding and our way of interpreting
information itself. In a famous experiment on perception, subjects were
asked to identify trick playing cards—black hearts, red spades—flashed
for a split second amid sequences of normal cards. After misidentifying
the altered cards at first, some subjects not only corrected their error but
seemed to experience a shock of recognition. “We have irreverently come
to call the response of some of our subjects the ‘My God!’ reaction,” wrote
the experimenters.35 Patients who receive a definite and evocative label
for a less than definite condition may experience a comparable sense of
things falling into place, of recognizing or understanding their symptoms
for what they are; those who receive a diagnosis of cancer for a condition
that may or may not bear out what is popularly meant by the word may
experience a “My God!” reaction of another kind.
Once we have a named medical disorder to attribute symptoms to, the
symptoms themselves can well intensify, which in turn makes them still
more salient. Of two people with the same set of common symptoms, the
one who believes they constitute an actual syndrome is likely to experience
more distress, quite as if the diagnostic label exerted a nocebo effect. “Epi-
demiologic comparisons of patients who have self-diagnosed functional
somatic syndromes with community residents who report the same symp-
toms suggest that refractoriness, chronicity, and intractability of symptoms
are more characteristic of the former group.”36
Entailing not only the broadening of diagnostic categories but the
popularizing of diagnostic labels, medicalization itself promotes a simi-
lar effect, with evocative labels making symptoms more prominent by
flagging them and placing them in a kind of explanatory system. Experi-
ments suggest that perception of our somatic states, including heart
rate and skin temperature, can be influenced by verbal cues and sugges-
tions.37 A label’s power to cue internal perception in this way comes into
play particularly in syndromes governed by a sort of headline, as many
are. People who encounter scare stories about toxic chemicals in the
media, and believe themselves the victims of exposure, may look for and
find signs of resulting illness. “Armed with . . . disease labels, residents
may effortfully scan their bodies for sensations that are consistent with
the labels . . . When given a diagnosis, individuals apparently selectively
attend to symptoms in a set that are consistent with the disease.”38 Like
the strings raising a collapsed marionette into a familiar posture, the label
pulls unorganized symptoms into shape; and so, under the label’s power,
they come to life.
132 THE NOCEBO EFFECT

An Iatrogenic Label

The noxious power of diagnostic labels is attested in a survey of some five


thousand German citizens in which respondents presented with “a vignette
containing a diagnostically unlabeled psychiatric case history” took a darker
view of the case if they classified it as schizophrenia.39 (In a measure of the
international sway of the DSM, the vignette was constructed in accordance
with DSM criteria.) It’s as if the tag alone served to make the behavior more
threatening. A label can also prejudice medical interpretation, as in a pre-
DSM-III study where medical staff at a psychiatric hospital were given alter-
native descriptions of a fictitious patient that were identical except that one
summed up the patient as suffering “schizophrenia—paranoid type” and one
didn’t. By itself, this potent descriptor led to reduced expectations for recov-
ery among both doctors and social workers.40 It would be foolish to suppose
that while the suggestive power of labels can influence the judgments of both
professionals and the laity, they can’t influence those of patients themselves.
In the case of certain syndromes, attaching an evocative label to one’s illness,
identifying the symptoms that flesh out the label, and inflaming them by
selective attention go hand in hand. So it is that some patients diagnosed
or self-diagnosed with fibromyalgia “learn to report each and every symp-
tom,”41 a practice that can only aggravate their distress.
Precisely by defining symptoms, a diagnostic label can sharpen them as
well as link them with others into a whole greater than its parts. As a result
of this sort of noxious effect, those to whom a label is applied, or who apply
it to themselves, may fare worse than those with similar symptoms not
attached to a label. Such is reportedly the case with fibromyalgia, a condi-
tion for which no cause or laboratory markers can be found but whose
name gives it an appearance of specificity. Writes Nortin Hadler,

Fibromyalgia denotes nothing more than persistent widespread pain. How-


ever, in the labeling, the patient is forever changed . . . The fate of patients
with persistent widespread pain labeled as “fibromyalgia” stands in reproach
to whatever theory underpins this labeling and subsequent treatment act.
In the community, the majority of people with persistent widespread pain
improve with time, but those labeled as “fibromyalgia” seldom do.42

Acting as a symptom-booster, the label in this case contradicts the theory


held by many doctors and patients that bestowing a name on a condition
has therapeutic value in and of itself. Diagnostic guidelines for fibromyal-
gia were specified in a 1990 paper whose lead author later concluded the
condition doesn’t exist.43 The label lives on, however, enticing patients to
believe the condition lends itself to medical management and doctors to
order serial tests, which are two courses to the same end of frustration.
NAME GAMES 133

The persistence of a disclaimed disorder brings to mind other con-


ditions that survive their own cancellation, from the deficits shown by
children after the diagnosis of a heart condition has been revoked to the
proclamation of ADD on the cover of Time years after it became ADHD.
Even though the act of diagnosis is considered by some an effective ther-
apy, cases like these suggest that a diagnosis can only too readily take on a
life of its own. Placebo becomes nocebo. Analogously, though medical tests
can have placebo value,44 in the case of nonspecific illnesses like fibromy-
algia testing either to exclude or pin down causes is more likely to produce
anxiety than benefit. In view of these and other risks of excessive testing,
it’s ironic that in a recent survey of general practitioners in the UK, 31 per-
cent reported that they frequently, and 50 percent that they occasionally,
ordered “non-essential technical examinations of the patient” for placebo
purposes.45

The Power of Names

The better to understand how information about risk factors is received


by people who undergo health screening, psychologists conducted a
series of studies in which subjects were screened for a fictitious disor-
der impressively named “thioamine acetylase (TAA) enzyme deficiency,
a risk factor for a complex of mild but irritating pancreatic disorders.”46
At the start of the experiment subjects (college students) were met by a
figure in a white coat, seated in a room decked with medical posters and
charts, and had their blood pressure taken. In other words, they were
immediately enmeshed in a convincing charade. Well before researchers
identified the rites and props of the medical encounter as a vehicle of
the placebo effect, social scientists had mastered the use of stagecraft to
engineer impressions.
The screening test in question consisted of dipping a “TAA test strip,”
actually a urinary glucose strip, into a cup containing the subject’s saliva.
The strip was rigged to turn green, a result given different interpretations
depending on the experimental condition the subject was assigned to. Of
interest to the investigators was how risk information generated by this
sham exercise would be processed. Most revealing, however, is that the
exercise was carried out at all. Instead of giving false readings of an actual
measure, as in studies where subjects receive spurious blood pressure or
cholesterol numbers for research purposes, the experimenters tested for a
nonexistent condition with an imposing name. If they assumed that a test
advertised as identifying not even a mild condition, but a risk factor (or
possible risk factor) for a mild condition,47 would be credible, they guessed
right. With the help of appropriate shamming techniques, the subjects were
134 THE NOCEBO EFFECT

persuaded to accept a test of no possible medical significance—a test that


is really an abuse of medicine—as a valid procedure. Only because screen-
ing the population for risk factors is so well established and so generally
assumed to be a pure good was this absurdity possible. (In some itera-
tions of the experiment, duped subjects were told it was part of a federally
funded “Health Awareness Project”—an unwittingly apt comment on these
civic crusades.)48 Much as the placebo effect of medical procedures and
treatments is supported by the immediate context—so that some now refer
to it as a context effect—the study’s fictions were supported by the larger
context of medicalization in which it was set. This context is totally ignored
by the authors, however.
“Rarely do we read about abandonment of a useless test,” a doctor
observed 35 years ago.49 The test in these studies would have been point-
less even if the enzyme deficiency in question existed. We might consider
the impressive but spurious term, “thioamine acetylase enzyme deficiency,”
an emblem of the medicalization of language itself.

The Power of Proper Names: A Special Case

Such is the evocative power of a label that it can persuade us of the reality
of a nonexistent deficiency or the specificity of a syndrome with no labora-
tory findings and many generic symptoms, like fibromyalgia. As with the
patient who is convinced he suffers from whiplash and carries that diagno-
sis with him to the doctor, the label itself appears to be crucial to a number
of syndromes—the element that binds the entire experience together and
gives it definition and life.
In the controversial instance of Multiple Personality—a term used
both in DSM-III and popular lore—a special set of labels seems to be of
the essence. The various inmates inhabiting a patient with a plural iden-
tity don’t appear fully present and haven’t convincingly established their
existence until each one has a proper name. As noted by Allen Frances,
most cases of this disorder “were induced by the efforts of well-meaning
but misguided therapists who were as clueless about what was going on
as were the patients. It is not hard for a suggestible therapist treating a
suggestible patient to turn any run-of-the-mill psychiatric problem into
MPD [Multiple Personality Disorder].”50 Central to the rite of conjuring,
eliciting, or producing multiple personalities is the act of naming. Thus,
people diagnosed as multiples call themselves by one name or another
depending on which personality happens to be on stage at the moment.51
But while names serve as the keystone solidifying the entire fictitious
arch of multiple personality, they’re unlikely to spring from the patient
spontaneously.
NAME GAMES 135

Pierre Janet recorded the following exchange with a patient, Lucie:

“How are you?”


“I don’t know.”
“There must be someone there who hears me.”
“Yes.”
“Who is it?”
“Someone other than Lucie.”
“Ah indeed. Another person. Would you like us to give her a name?”

Upon which the speaker declared herself Adrienne. Janet commented,


“Without a doubt I suggested the name of the personage and gave it a lot
of individuality but we saw how much it develops spontaneously . . . This
naming of the unconscious personage greatly facilitates the experience.”
Reviewing the same sequence, Binet put greater emphasis on Janet’s con-
tribution: “It is plain that M. Janet by . . . declaring that someone must exist
in order to answer him, aided materially in the formation of a person; he
himself created her by suggestion.”52
In a benchmark case of multiple personality that shows signs of cued
performance, the therapist, Morton Prince, supplied the identifiers for
the patient’s various co-personalities, labeling them BI, BII, BIII, and BIV.
Then he introduced a refinement. “Desiring to have some distinctive term
of address for BIII, I gave her the name of Chris.”53 Like Lucie, the infa-
mous Hillside Strangler Kenneth Bianchi christened his own alter when
prompted. After surmising that a “part” of Bianchi hadn’t yet come for-
ward, the clinician interviewing him summoned the absentee and asked,
“Do you have a name I can call you by?” Invited all but explicitly to assume
a part, Bianchi obliged. “Steve. You can call me Steve.”54 Steve, then, was
an inhabitant of his body of whom he knew nothing, who committed the
murders for which he (Bianchi) was charged. In the 1980s, while this case
was fresh in people’s minds, an experiment was run to test the theory that
ordinary people, that is, people without multiple personalities, could be
induced by a few simple cues to simulate the same behavior exhibited by
Bianchi. They did so.
In the experiment, the act of naming proved critical to the perfor-
mance of the Bianchi role. Of “the subjects who adopted a second name”
83 percent also professed to have no memory of the alter following
“hypnosis,” just like Bianchi. Furthermore, of those subjects who both
adopted a different name and professed amnesia, 90.9 percent “admit-
ted guilt during enactment of their second identity,” also like Bianchi.
Indeed, “100% of the subjects who adopted a different name referred to
[the Bianchi figure] as different from themselves.”55 That is, the adoption
136 THE NOCEBO EFFECT

of a name for the alter confirmed his independent existence. In a sort of


limiting case of the magic of the right word, the name itself crystallized
the variant identity.
While Bianchi simply ran with the suggestions obligingly provided
by his interviewer, less cynical subjects or patients could easily be led to
believe fantasies administered by a therapist. The cited study cautions,
accordingly, that the psychiatric validation of multiple personalities can
have the effect of conscripting patients into an extravagantly fictitious sys-
tem, among other harms. The patient can be led to uncover or perform
alternative selves that in turn “lead the therapist to encourage and validate
more elaborate displays of the disorder,”56 and so the multiple personali-
ties multiply, with results that are certainly ridiculous but also probably
harmful. In another manifestation of self-reproducing power, the diagno-
sis of MPD survived its own demise and the scorn of the editor-in-chief
of DSM-IV, remaining in that document as the former name of what was
now called Dissociative Identity Disorder. While in theory MPD accredits
variant identities as DID doesn’t,57 in practice the new diagnosis keeps the
multiple-personality operation going while disclaiming a label that adver-
tises its excesses. Just as with MPD, it appears that therapists who believe in
DID encounter cases at a far higher rate than those who don’t.58
Though neither MPD nor DID overlaps normality like ADHD, the pro-
cess by which the diagnostic label is played out, and names come to life,
in the instance of multiple personality does have broad resonance. If most
patients become multiples in the course of therapy rather than entering as
established multiples59—quite as if their problem exploded in the course
of its own treatment—so too may children learn to think of themselves as
having ADHD, and learn to perform ADHD, as a result of strongly leading
messages from parents, therapists, teachers, and others. If “many psycho-
therapy clients who are led to enact the multiple personality role probably
become convinced by their own enactments and by the validation these
enactments elicit from their therapists,”60 surely children can be convinced
by the less exotic role of the ADHD child, all the more because the role is
socially accredited and supported by common symptoms.
The transaction between multiple-personality client and therapist
also bears on the search for confirming signs of a diagnosis. Whereas
the therapist searching for indicators of multiple personality unwit-
tingly encourages more and more expressive displays, patients scanning
for symptoms under the influence of a provocative diagnosis can get
caught in an unwitting dynamic of symptom magnification and clinical
worsening. Something like this noxious dynamic seems to be at work
in refractory syndromes that draw their symptoms from the pool of
normality.
NAME GAMES 137

Stencil Work

While it’s often said that patients want a label for their condition, the fact
is that a label can also mobilize symptoms, provide a suggestive script for
a disorder’s performance, and convey an impression of specificity where
none exists. For the doctor, too, a label has risks, in that once the patient’s
condition has acquired a name, it’s hard to revoke it and reopen the case.
Say amorphous ills are organized into symptoms and the symptoms are
referred to a disorder presumed to lend itself to medical management.
A disorder created in this way “becomes difficult to unmake.”61 Names
reify—not only in medical records (where a diagnostic label may live on
for years even if erroneous)62 but in the minds of doctor and patient. One
reason for the counterintuitive popularity of depression may be just this,
that the diagnosis packs so many potentially shapeless distresses and dis-
contents into a single all-too-convincing package.
A curious study of misdiagnosis brings out the power of depression to
impose a ready-made form on ambiguous cases. In 1994 some four hun-
dred primary-care doctors were asked in a survey if during the preceding
two weeks they had recorded an alternative diagnosis “when they recog-
nized that a patient met DSM-III-R criteria for major depression”—or so a
paper in Archives of Family Medicine reports.63 Actually the doctors were
asked more ambiguously, “In the last 2 weeks, how many . . . patients do you
estimate met DSM-III-R criteria for major depression? (Criteria listed on
back),” suggesting that both the number of patients and the degree of their
match with DSM criteria were estimates. Fully half of the respondents said
they had given an alternative diagnosis, the reason most frequently cited
being that they were uncertain about the diagnosis of depression. (Elimi-
nated from the study were 43 doctors who reported not seeing any patients
who met the DSM language.) However, the authors insist that the real rea-
son for the alternative diagnosis is that the doctors wanted to ensure that
the patient was reimbursed or spared the stigma that attaches to depres-
sion, or the like. The authors are so certain that anyone who exhibits some-
thing approximating DSM depression is depressed that they simply write
off their own respondents’ claim that they were uncertain.
How could one be uncertain about whether a patient really qualified
as depressed? The alternative diagnoses provided by the doctors suggest a
good reason: The presenting symptoms may be largely generic. The most
frequent non-DSM diagnoses were “fatigue/malaise” (60 percent) and
“insomnia” (44 percent)—complaints that in and of themselves will take a
patient almost half way to a DSM diagnosis of Major Depression, though
even in these cases the symptoms may not have been present “most of
the day, nearly every day” over the same two-week period as required by
138 THE NOCEBO EFFECT

the DSM. To qualify as depressed you must show, in addition to common


symptoms like insomnia or changes in appetite, either “depressed mood”
or “loss of interest or pleasure”; but malaise, which blends into fatigue,
could certainly pass for the latter. Given, then, that such common symp-
toms as fatigue/malaise and insomnia can be tendentiously inflated into
depression, one can only commend those doctors who didn’t succumb to
the routine of checking the “depression” box and prescribing the inevitable
pill. In view of the nocebo potential of diagnosis, a doctor might well hesi-
tate to apply such a suggestive label as “depression” in unclear cases, espe-
cially when the patient complains of problems like insomnia and fatigue,
not depression per se.
Recall that Robert Spitzer outlines a case of depression that meets DSM
requirements, but which a conscientious doctor might hesitate to diagnose
as depression.

An individual who has marked loss of interest and pleasure (not depressed
mood) with five of the nine symptoms (e.g., hypersomnia, weight gain) pres-
ent to a marked degree nearly every day for 2 weeks might be neither sig-
nificantly distressed nor role-impaired. Such an individual may still have a
depressive disorder.64

Precisely because the patient doesn’t seem any the worse for meeting the
paper criteria for depression, a doctor might well decide against apply-
ing such a potentially depressing label. Spitzer considers not diagnosing
depression in this case as a false negative. However, another of the movers
of the DSM-III revolution takes the position that in some cases a respon-
sible clinician may not diagnose a disorder even though it meets DSM
criteria.

When the Manual prescribes a diagnosis the clinician does not feel is pres-
ent, he may simply not follow the rules. It is formally possible for a person
to meet DSM-III criteria for alcohol dependence with only two symptoms,
one indicating tolerance, another indicating social problems. Anyone who
drinks heavily and regularly will probably develop tolerance, and if he or she
has a relative or friend who regularly tells him that they do not like his drink-
ing so much, he can qualify as alcohol dependent, because criticism from
family members over a one-month period plus tolerance equals dependence.
If there are no other symptoms, and no more serious impairments than fam-
ily complaints, many clinicians would be reluctant to make a diagnosis of
alcohol dependence.65

Why is such reluctance justifiable while a corresponding reluctance to


diagnose depression in questionable cases isn’t?
NAME GAMES 139

Another study in which Spitzer took part finds that the presence of a
common physical symptom like fatigue, insomnia, or headache sharply
raises the odds of a diagnosis of mood or anxiety disorder (which in the
case of the first two symptoms is unsurprising, both being on the DSM list
of secondary criteria for depression). But what elevates the risk of diagno-
sis even more is a somatoform—that is, psychogenic—symptom, defined
as being “physically unexplained.”66 However, many ills, including those
just named, don’t necessarily have detectable causes. That a symptom is
medically unclear67 doesn’t establish the person who has it as a somatizer.
(The word suggests someone oversensitive to bodily problems and prone
to complain about them, but in the study in question we aren’t told why the
patients happened to be visiting their doctor when they were asked to fill out
a questionnaire inquiring about 15 common symptoms.) The strong link
between somatoform symptoms and the diagnosis of depression may say
more about the doctor than the patient, as it’s the doctor who decides that
because the symptom lacks a physical explanation it must have a psychic
one. While the framers of DSM-III broke with psychoanalytic tradition in
refusing to speculate about causes—indeed, a shared dislike of etiological
theorizing gave them a strong sense of group identity—particularly in the
case of depression the theory of covert causation remains in effect.
There’s much to be said for the ability to preserve uncertainty, to keep
an unclear case open by not filing it under a ready-made category or con-
cluding that a mental disorder has produced a symptom because no physi-
cal cause presents itself. A trenchant medical paper contrasts the work
and style of the primary-care doctor, who commonly sees problems that
don’t really lend themselves to diagnosis, with those of the specialist whose
patients are referred just because they’re probable candidates for diagnosis.
It’s a case of “the family physician as the simple humanist who prefers action
to words” against “the specialist as a single-minded biomedical scientist”—
roughly, Montaigne vs. Descartes.68 In accordance with this contrast of
methods, the primary-care doctor may take practical steps before resolv-
ing the niceties of diagnosis. So it is that the author approves prescribing
antidepressants to determine if the patient is depressed, reasoning that “‘If
it gets better with X, then it must have been Y’ is a diagnostic strategy that
makes sense at the primary care level.”69 But the patient who gets better
with an antidepressant might get better without one. In a study reported
by K. B. Thomas in 1974, 82 percent of patients with common, medically
unexplained complaints like those now packaged as depression improved
despite being treated with nothing but reassurance and, in most cases,
placebo.70 Antidepressants have a high placebo index of their own, and
patients treated with such drugs experimentally, to ascertain if they were
depressed in the first place, could have their understanding of themselves
140 THE NOCEBO EFFECT

altered by the trickery of the placebo and the mystique of the diagnostic
explanation.
The temptation to interpret events in the light of pseudo-explanations is
a strong one. A disciple of Wittgenstein who became a psychiatrist cautions
against false explanations and conceptual foreclosure, noting “the danger
of my case history taking to become stereotyped.”71 Wittgenstein fought
against even his own tendency to fall into traps of explanation and was in
turn influenced by Tolstoy, who underscores the attraction of stereotype
in a famous simile in War and Peace likening the neat explanation to a
stencil. We assume the campaign of 1812 was dictated by Napoleon’s will,
blotting out anything and everything that doesn’t fit this narrative, “just as
in stencil work this or that figure comes out, not because the colour was
laid on from this side or in that way, but because it was laid on from all
sides over the figure cut in the stencil.”72 An indeterminate distress or ill
is like an amorphous color-field that takes on a legible shape as a result of
a figure laid over it. (Thus, if a doctor goes down a checklist of symptoms
for IBS, with the patient endorsing them one by one, the patient becomes
an irritable bowel case even though she might well have other symptoms
belonging to kindred syndromes, including, say, noncardiac chest pain.)73
A diagnostic label, on this showing, is the figure that provides a dramatic
illusion of definition because all that doesn’t fit remains outside the field of
vision. A stenciled figure makes sense to our meaning-seeking minds in a
way an irregular shape doesn’t.
In medical scenes in The Death of Ivan Ilych, Anna Karenina, and War
and Peace itself, doctors act like human stencils, producing or not pro-
ducing an illusion of mastery by imposing their ready-made ideas on
the cases before them. Ivan Ilych’s doctors perform diagnostic charades,
labeling his ailment “floating kidney” or “vermiform appendix” even as he
deteriorates under their eyes, ravaged by a disease Tolstoy leaves name-
less. In fact, the doctors in this tale behave much like those described
by Montaigne three hundred years before, contradicting one another
and putting on imperious airs as if a behavioral pretense could make up
for their ignorance. (“The art of medicine,” writes Montaigne, “has not
reached such certainty that, no matter what we do, we cannot find some
authority for doing it .  .  . If your own doctor does not find it good for
you to sleep, to use wine or any particular food, do not worry: I will find
you another who does not agree with his advice.”)74 In portraying medi-
cal men who might as well have been practicing in the sixteenth century,
Tolstoy contests the ideal of medical progress that each of them implicitly
professes to represent.
While satirists had long derided the pretensions of medicine, Tolstoy’s
critique of medical arrogance is especially strong, perhaps because it was
NAME GAMES 141

during his lifetime that medicine first won the status of a science; it there-
fore seemed a particularly audacious imposture. Predicated on a strong
analogy between the patient and the doctors who treat him, The Death of
Ivan Ilych suggests an analogy, too, between the protagonist as one of the
“new men” called into being by the legal reforms of 1860s and the doctors
intensely proud of the newly scientific status of medicine. Not only are Tol-
stoyan doctors like these puffed up with vanity as their tribe had long been
in the eyes of literature, but they profess to be at the forefront of knowl-
edge itself. Tolstoy was particularly critical of the mystique of specificity,
as in the caustic sketch in Anna Karenina of a certain medical celebrity
who puts on airs of “special knowledge.”75 Though Kitty, the patient, shows
signs of consumption, what is consuming her is a matter outside the pur-
view of medicine. If medicine emboldened us to think of a human being as
“a possible object of positive knowledge—a living individual whose body
and mind could be understood by scientific reason,”76 Tolstoy denies this
reduction of a person to a knowable object with every bit of the consider-
able power at his command.
So it is that Natasha’s grief in War and Peace mocks the efforts of the
learned doctors called in to treat her. “Doctors came to see her singly and
in consultation, talked much in French, German, and Latin, blamed one
another, and prescribed a great variety of medicines for all the diseases
known to them,” which is a sure sign they know nothing about what’s
wrong with her. It’s at this point that Tolstoy delivers the astonishing obser-
vation that Natasha’s disease eluded medical knowledge “as no disease suf-
fered by a live man can be known, for every living person has his own . . .
disease, unknown to medicine.”77 Only in the latter third of the nineteenth
century did diseases come to be pictured generally as entities that exist
in independence of particular persons.78 In the story of Natasha’s private
disease Tolstoy challenges this notion explicitly, even polemically, just as it
begins to be established.
By letting the reader but not the doctors into the story behind Natasha’s
ailment, Tolstoy reminds us of the narrowness of an exclusive preoccupa-
tion with presented symptoms. That the doctors have no idea what really
ails Natasha doesn’t stop them from dosing her with pills and powders. She
is given the impression that her pain
would soon pass if only the coachman went to the chemist’s in the Arbat and
got a powder and some pills in a pretty box for a ruble and seventy kopecks,
and if she took those powders in boiled water at intervals of precisely two
hours, neither more nor less . . . Even to Natasha herself it was pleasant to see
that so many sacrifices were being made for her sake, and to know that she
had to take medicine at certain hours, though she declared that no medicine
would cure her and that it was all nonsense.79
142 THE NOCEBO EFFECT

While the pills and powders are nonsense, they serve to rally the family and
provide a focal point for its endeavors, and in any case stand as something
definite in a menacing sea of the unknown. How unlike her condition itself
is the box the pills come in, the first unspecific and impossible to slot into
medical categories, the second as specific as can be and appealingly stan-
dard in shape. While the pills within are of no medical value, the box itself
is perfectly adapted to its job of mobilizing the family on Natasha’s behalf—
organizing their concern and “sacrifices.” As Tolstoy makes plain, attend-
ing to Natasha in this way solaces the family as well as providing her some
comfort. In effect, then, the rituals of care buy time for the patient to return
to herself, as she eventually does. “Natasha’s grief began to be overlaid by
the impressions of daily life, it ceased to press so painfully on her heart,
and she began to recover physically.” While the pills and powders engross
everyone’s attention, the most unobservable, the least salient of forces, time
itself, heals Natasha.
6

Beware What You Look For:


Two Cases of Medical Activism

Strangers and Doubles

In the mid-1990s I found myself on a committee charged with reviewing


medical expenditures under my university’s health plan. Like the rest of the
country, the members of the plan had fallen in love with antidepressants,
which accounted for our largest drug expense—hundreds of thousands of
dollars annually, as I recall. When someone around the table commented
that this was a lot of money to be laying out for mood-altering pills, a
defender countered, “If they prevent one suicide, they’re worth it!” Argu-
ment ceased. No one in the room, including me, was aware that antidepres-
sants actually increase the risk of suicide in patients up to age 24. Thus,

The Food and Drug Administration’s (FDA) meta-analysis of antidepres-


sant trials found that children randomized to receive antidepressants had
twice the rate of suicidal ideation and behavior compared with children who
received placebo. Meta-analysis of adult placebo-controlled trials found that
participants 18 to 24 years of age randomized to receive antidepressants were
at elevated risk of suicidal thoughts and behavior, those 25 to 64 years of age
were at equal risk, and those 65 years or older were at lower risk.1

With suicidal thoughts or attempts listed in the DSM among the symptoms
of depression itself (arguably the gravest of the lot), one would not expect
an antidepressant to increase this risk in any group, let alone children.
As it happened, my health plan also recommended prostate-cancer
screening for all men over age 50 and offered it free. At the time I was not
only unaware of any argument against early detection of cancer, I couldn’t
have conceived of one. The principle that early detection saves lives seemed
as intuitive as an axiom, or rather it would have seemed so if I’d thought
about it at all. Like millions of others, I therefore signed up for PSA testing.
144 THE NOCEBO EFFECT

Only later did I come to learn that the wisdom of prostate-cancer screening
was hotly debated in the medical literature right from the beginning of the
PSA era 25 years ago and that the harms of PSA testing were and are more
certain than its benefits. I had no idea a screening test could harm. Once
that fallacy was dispelled, I asked my Wellness Program to provide infor-
mation about PSA testing, both pro and con, to eligible men. The admin-
istrator flatly refused.
This, it seemed to me, showed a closed mind. The claim that antidepres-
sants saved lives closed debate. But even as I came to see that the campaigns
against depression and prostate cancer both used inflamed arguments and
appealed to fixed ideas, I failed to appreciate how strong the family resem-
blance between the two really is.
That a number of syndromes share generic symptoms like fatigue, sleep
difficulties, headache, joint pain, and problems with concentration sug-
gests that they grow out of the same large set of ills inherent in normality.
This chapter focuses on two conditions that, by contrast, have no common
substrate whatever but have been subject to similar patterns of overdiag-
nosis. Except that a prostate cancer patient might become depressed, the
only thing depression and prostate cancer have in common is the crusad-
ing dynamic that has made an epidemic of both.

Blurry Targets

In October 2011, days after the US Preventive Services Task Force con-
troversially recommended against routine screening for prostate cancer,
the National Center for Health Statistics reported that the use of antide-
pressants quadrupled over the last two decades. Both stories were widely
reported, though no one to my knowledge connected them or drew the
analogy, which was there for the making, between soaring treatment of
prostate cancer and soaring use of antidepressants over the same period.
While the launch of SSRIs and the launch of PSA testing both date to 1987,
more is at work in the analogy than temporal concurrence. In both cases
the condition in question is fundamentally ambiguous, in both cases exist-
ing means of detection are insufficiently discerning, in both cases large
populations are screened anyway. Indeed, in both cases screeners have gone
out into the community rather than waiting for the community to present
itself. In both cases people have been diagnosed by the millions. Just as PSA
testing assumes that cancer uncovered as a result of screening behaves like
cancer that manifests itself clinically, those who screen the general popula-
tion for depression take for granted “the myth of the equivalence of com-
munity and clinical diagnoses.”2 While PSA testing “can tap into a very
large reservoir of clinically silent prostate cancers,”3 testing for depression
BEWARE WHAT YOU LOOK FOR 145

taps into constants of the human condition, though advocates of testing


seem to regard the ubiquity of prostate cancer on the one hand and sad-
ness on the other not as a deterrent but a call to action. In both instances
the sheer volume of discovered cases creates an impression of crisis that
leads to more screening and more cases. In both instances the upshot of
testing is treatment of questionable value across a large population. Both
phenomena testify, first, that “all screening programmes do harm; some
do good as well,”4 and second, that the balancing of risks and benefits is
itself put at risk by the medicalization of common conditions. The overdi-
agnosis of depression and overdiagnosis of prostate cancer—two contrived
epidemics—resemble each other not because either was modeled on the
other but because both are driven by a spirit of convinced activism.
Prostate cancer is a profoundly ambiguous, even paradoxical con-
dition. Seemingly belying its own identity, in most cases it’s actually
inconsequential, at least until discovery triggers treatment in the form of
surgery or radiation. A commonplace of urological medicine holds that
while few die of the disease many have it, and that autopsies of men who
died of other causes often find prostate cancer. One would have thought
such a disease a poor candidate for mass screening. Early in the PSA era it
was already becoming obvious that screening a large population for pros-
tate cancer will inevitably detect a great deal of dormant disease. “It has
long been feared,” notes a 1995 review article in the New England Journal
of Medicine, “that population screening would preferentially identify . . .
latent cancers (rather than aggressive disease) and that thousands of men
who are more likely to die of other causes would be subjected to unnec-
essary testing and treatment for prostate cancer.”5 That’s exactly what
happened, except that the number of men treated for prostate cancer of
no clinical significance now stands not in the thousands but well over a
million.
Even as the discovery of early-stage cancer as a direct result of PSA test-
ing seemed to prove the value of mass screening to the world, the error of
that inference was known to medicine. While there was no evidence in the
early 1990s that PSA testing saves lives, the knowledge that it has built-
in fallacies fostering the illusion that it saves lives was already in place.
Both lead-time bias (the impression that discovering cancer earlier extends
survival) and length-time bias (the impression that screening makes can-
cers more curable, where in fact it inevitably favors the detection of slower,
more indolent malignancies) were understood well enough to be cited in a
1993 editorial by one of the prime movers of PSA testing.6 Medicine pro-
ceeded with PSA testing not only in the absence of evidence of its value but
despite being aware of its traps, as if the urgency of the war on cancer over-
rode medical restraint, just as the terror of cancer overrode the aversion
146 THE NOCEBO EFFECT

men would normally feel toward harmful, especially sexually harmful,


treatments.
Contrary to the preconceptions driving so many to incur the harms that
result from treatment, prostate cancer isn’t one thing at all; its very name
is a sort of official misnomer. Men with the highest grades of the disease
stand a 20-times worse chance of dying within 10 years of diagnosis than
men with the lowest grades have of dying within 20. So blurry, in fact, is
the line between cancer and noncancer that “even under the microscope,
the distinction between malignancy and inflammation or hyperplasia can
sometimes be very subtle.”7 Much of what is called cancer isn’t destined to
cause death—and so too, much of what is regarded as depression resolves
without medical intervention.
For depression, too, is more than one thing. Not only does it range from
the mild to the severe, but included under its tent are inflated diagnoses as
well as modes of common sadness. Because of the normality of much of
what is labeled as depression, depression itself has been catalogued among
the generic symptoms “very prevalent in healthy, nonpatient populations.”8
(It says something about the conceptual fog surrounding depression that
this official disorder with constituent symptoms appears at times as a
symptom.) In The Loss of Sadness, Allan Horwitz and Jerome Wakefield
document how warranted responses to life itself, such as sorrow over the
dissolution of a marriage, the loss of a job, even the death of a loved one,
came to be bundled diagnostically with the pathology of depression.9 Their
critique of this diagnostic maneuver is especially telling in that patients
themselves often interpret their symptoms as responses to circumstance,
with good reason. A qualitative study found that “often patients do not
draw clear boundaries between their depressive symptoms and under-
standable emotional reactions to life experiences.” If the patient falls into
this category, “it should be easier [for GP and patient] to agree labels or
diagnoses other than ‘depression.’”10
At present, however, depression has become a default label for the ills of
life. The transformation of a reaction into a medical matter is dramatized in
the study where actors posing as workers recently laid-off reported fatigue,
stress, and sleep difficulties three to four nights per week—a condition
deemed trivial by the authors of the study, in that the subjects showed few
signs of impairment and the symptoms were of short duration and social
origin.11 Diagnosed with adjustment disorder, many were treated with the
antidepressant they sought—Paxil—despite its nontrivial side effects and
the lack of evidence of efficacy for this use. In essence, they were treated
as if they were seriously depressed. (Even the actors who simulated “major
depression” reported no tearfulness or distorted or suicidal thoughts.) It
was a wise psychiatrist who noted a few years before the advent of DSM-III
BEWARE WHAT YOU LOOK FOR 147

that “it will inevitably happen from time to time that we will be asked and
expected to remedy the normal discontents and disappointments that are
part of our common human life.”12
As a result of mass screening with crude instruments (the analogy with
PSA testing is striking) as well as overzealous diagnosis, all abetted by a
strong trend toward the medicalization of life, the doctrine that clinical
depression is a common affliction of the American population has estab-
lished itself and gone into general circulation. Defining common ills as
symptoms and ignoring the sources of sadness in life itself, the DSM crite-
ria for Major Depression authorize the interpretation of distress as a men-
tal disorder. As we know, you don’t even have to show depressed mood
to qualify as depressed under the DSM; “markedly diminished interest or
pleasure” will do. In fact, a screening questionnaire designed by Spitzer and
others to cut through the complexities of the DSM criteria omits depressed
mood altogether.13 While depression without feeling depressed verges on
paradox,14 such a category serves to open up the diagnosis of depression
to more cases. It appears that patients with depression-like symptoms are
considerably more common than those with depression per se—two to
three times more common, by one estimate.15 If there were a way to elevate
these ambiguous cases to clinical status, the depressed population could be
greatly enlarged. The DSM criteria provide a way. That they certify so many
as depressed helps explain why they prove useful to drug makers interested
in exploiting the market for antidepressants to the limits of the possible, as
well as why they have remained essentially unchanged for 30 years. In turn,
antidepressants have been approved on the basis of studies that generated
statistically but not clinically significant findings—while prostate cancer is
commonly treated with surgery or radiation whether or not it has clinical
import.
Like the idea that prostate cancer might be a normal condition of life,
the possibility that much Major Depression might not be a disorder at all
has been drowned out by medical activism.

Imperceptible Danger

Though early-stage prostate cancer is symptomless, the very thought that


cancer might be growing imperceptibly in their body is enough to spur
men to get screened for the disease and risk the adversities of treatment if
found to have it. The biomedical principles in whose name DSM-III was
launched lead straight to the position that mental disorder, too, can emerge
without necessarily causing distress, particularly in its early stages.16 So
argue Spitzer and a colleague, in the process drawing an explicit analogy
between asymptomatic cancer and incipient psychological illness. The
148 THE NOCEBO EFFECT

authors agree with DSM-IV language stipulating that “disorder may be


diagnosed in situations where a condition has not yet caused harm in the
form of distress or impairment but is likely to do so in the future. Analo-
gously, in physical medicine, a tumor may be asymptomatic but still be
considered a disorder because with time it is likely to cause symptoms.”17
But how could an asymptomatic disorder, assuming it exists, be diagnosed
according to a scheme based on patterns of symptoms? And how could
something like depression be asymptomatic in the first place?
The DSM attempts to solve this riddle not by admitting the paradox
of invisible symptoms but by allowing for symptoms of depression that
somehow escape the notice of the person who has them. Thus, the cardinal
symptoms of depression in DSM-V and its predecessor authorize a diagno-
sis even if the patient doesn’t report or actually denies them.

1. Depressed mood most of the day, nearly every day, as indicated by


either subjective report (e.g., feels sad, empty, hopeless) or observa-
tion made by others (e.g., appears tearful).
2. Markedly diminished interest or pleasure in all, or almost all, activi-
ties most of the day, nearly every day (as indicated either by subjec-
tive account or observation).

In order to qualify for Major Depression, you have to meet either (1) or (2)
along with four secondary criteria out of a possible seven. The DSM-III criteria
made no provision for depressed mood or diminished interest based on the
judgment of third parties, though the text did note that a child might not com-
plain of depressed mood and that one who suffers a loss of interest or pleasure
“may not complain of this or even be aware of the loss.” The alternative sources
of evidence written into the DSM-IV and DSM-V depression language are in
the tradition of the alternative possibilities originally installed in DSM-III to
allow for the diagnosis of depression in the absence of depressed mood.18
In common parlance a medical symptom refers to a “subjective indica-
tion,” which complicates the notion of a symptom that reveals itself to a
third party but not its owner. The subjectivity of symptoms survives in the
medical distinction between a symptom and an objective sign, usually a
laboratory finding. In the case of the secondary symptoms of depression,
it’s clear, anyway, that you can’t think about suicide unknowingly, or at the
other end of the scale, suffer from insomnia unknowingly.19 Certainly I
can feel empty and hopeless and not label my condition as Major Depres-
sive Disorder, but that isn’t to say I’m unaware of feeling as I do. Cogni-
tive research has identified the sort of thoughts that stream through the
mind of a profoundly depressed person, thoughts such as “I’m worthless,”
“I don’t deserve to be loved,” and “Life isn’t worth living.”20 That you can
BEWARE WHAT YOU LOOK FOR 149

be under siege by thoughts like these and not know it seems improbable.
Imputing depression to patients who don’t claim to be depressed stands
in contrast to the ordinary practice of basing diagnosis on a patient’s own
words, a practice so essential that history-taking is accounted “the most
powerful diagnostic tool available to the internist.”21
Those who maintain, even so, that the depressed can be unaware of
their own state have an argument at the ready: that I fail to recognize my
depression because I fear the stigma of mental illness. This claim not only
presumes the point at issue (presumes I am depressed) but attributes a fear
that may or may not exist. Some 20 years ago a prominent psychiatrist
protested that

the troubled person is led to believe that he can’t help himself and must seek
out a professional healer when confronted with distress related to every-
day problems of living. His confidence . . . is eroded because he accepts the
view that emotional disturbance arises from forces beyond his grasp. He
can’t hope to understand himself through his own efforts, because his own
notions are dismissed as shallow and insubstantial.22

If the message that I can’t hope to understand the sources of my emotional


distress is demeaning and maybe worse, what of the message that I can’t
even understand that my distress is emotional in nature? That’s the impli-
cation conveyed by the interpretation of generic symptoms like fatigue as
surrogates of depression. Even though the framers of DMS-III refused on
principle to speculate on the etiology of disorders—leaving the belief in
theorized causes to the now-discredited Freudians—the assumption that
fatigue is a manifestation of an underlying mental disorder reverts to the
notion of mind secretly determining body, and the model of depression as
“the supposed puppeteer that caused everything else in the body to move”23
is as mechanistic as any Freudian conception. (Both Spitzer and his succes-
sor, Allen Frances, trained as psychoanalysts.) Without the heavy-handed
assumption that the patient has manifested a mental disorder somati-
cally because he or she dare not speak its name, the diagnosis of depres-
sion might never be made in such a case. Contrary to the interpretation
of unexplained ills as evidence of depression, everyday symptoms don’t
have to be symptoms of anything. Considering that in a study conducted
by Spitzer et al. insomnia raised the chance of a mood diagnosis more than
threefold and fatigue more than fivefold, these DSM-certified symptoms of
depression appear to be potent drivers of diagnostic inflation.24
If you’re hunting for depression and bent on interpreting ambiguous or
possible signals accordingly, then a patient who exhibits fatigue/malaise alone
is already well on the way to depression as codified in the DSM, with malaise
150 THE NOCEBO EFFECT

providing the statutory loss of interest or pleasure. Clearly, it’s possible to ele-
vate common problems into matters of psychiatric significance; clearly too, the
availability of popular pills for depression increases the diagnostic temptation.
Given that many patients seen in primary care appear to meet some but not
all of the criteria for DSM depression,25 a doctor could also inflate symptoms
with no great difficulty to make up the difference. (As for the clause stipulating
that the symptoms must cause “clinically significant distress or impairment” to
warrant a diagnosis, you could simply say that by definition the symptoms of
depression do one or the other, or both.) Yet patients who complain of fatigue
or insomnia only to learn that their real problem is depression have received
an unsettling message they are unlikely ever to forget. A normal patient given
a diagnosis “may never be quite the same again.”26
In some cases other than depression it would surely be regarded as pre-
sumptuous for doctors to decide that something not deemed a problem by the
patient is nevertheless exactly that. It appears many women have what could
be defined as a sexual dysfunction but don’t judge it a problem.27 If doctors
were to insist on regarding these women as candidates for treatment anyway,
we wouldn’t hesitate to fault them for overstepping their authority and distort-
ing a common condition into a disorder.28 Why is it any less presumptuous for
medicine to diagnose patients who don’t complain of depression? Nor can it be
said that it does no harm for medicine to simply define the reluctant as candi-
dates for treatment. Whether owing to the prestige of medicine, an instinct of
compliance, or some other reason, some patients who don’t want to be treated
may accede when treatment is pressed on them.29 In a study of treatments of
depression in which one quarter of the eligible population refused to partici-
pate,30 half of those who did participate were “unreceptive” to antidepressants
but treated with them all the same, in many cases with adverse results.
The medicalization of sadness began with efforts to screen the commu-
nity at large for depression, and the rationale for mass screening crumbles
unless the condition screened for is potentially or actually invisible to the
screened population. Mammography can detect incipient forms of cancer
that would otherwise escape observation, and the Depression Awareness,
Recognition, and Treatment Program launched in 1988 virtually alludes
to the Breast Cancer Detection Awareness Program launched two years
before. The notion that you can be depressed without knowing it represents
an assumption that simply has to be in place in order to capture as many
candidates for treatment as possible, the upshot of it all being that many
classified as depressed “do not believe that they have signs of mental disor-
der, do not raise such questions with their physician, do not seek help.”31
To antidepression crusaders, that depression can be imperceptible to its
victim is one more proof of its insidiousness. In reality, far from being a life-
saving measure, screening for depression seems to be of little benefit. “In
BEWARE WHAT YOU LOOK FOR 151

general, patients with undetected depression have milder forms of depres-


sion, which often resolve without intervention, than patients with identi-
fied depression . . . The outcomes of patients with detected and undetected
depression are similar when they are followed up over 6–12 months.”32 Those
prescribed antidepressants for what is actually a self-limiting condition are
denied the encouraging experience of their unaided capacity for recovery.

Searching and Finding

A celebrated study or hoax published in the pages of Science in 1973 (dis-


cussed briefly in Chapter 1) told of what happened when eight perfectly
sane individuals presented themselves at the door of a number of psychi-
atric hospitals, seeking admission because, so they said, they heard voices.
Duly admitted, they proceeded to act like themselves, but were perceived
and treated as schizophrenics, with one exception, until discharged on aver-
age some 19 days later. The psychodynamic assumptions then reigning made
it possible for psychiatrists to view these pseudo-patients as textbook cases,
with one unremarkable subject being described in case notes as follows:

This 39-year-old male . . . manifests a long history of considerable ambiva-


lence in close relationships, which begins in early childhood. A warm rela-
tionship with his mother cools during adolescence . . . Affective stability is
absent . . . And while he says that he has several good friends, one senses
considerable ambivalence embedded in those relationships also. 33

The sketch reads like a pastiche of generic ideas, a printout, virtually a par-
ody. The study itself, which portrayed psychiatry as a cuckoo’s nest, was
demolished in detail by Robert Spitzer.
One detail rang true to Spitzer, however: the high-handed interpreta-
tion of the 39-year-old’s history as a tale of “ambivalence.” Wrote Spitzer,
“Here, for the first time, I believe Rosenhan [author of the Science paper]
has hit the mark. What he described happens all the time and often makes
attendance at clinical case conferences extremely painful, especially for
those with a logical mind and a research orientation”—the last comment
a slap at the Freudians.34 Not that Spitzer exempted researchers from the
tendency to construct the world in the image of their theories and prefer-
ences. He once observed in an interview,

Researchers always give maximal preference for the disorders that they have
a particular interest in. In other words, if you’re really interested in panic
disorder, you’re going to tend to say it’s very common. You never hear an
expert say, “My disorder is very rare.” Never. They always tend to see it as
more common.35
152 THE NOCEBO EFFECT

This comes close to saying that the investigator with an interest in a dis-
order will tend to discover evidence of that disorder—enough to make it
seem “very common.”
Because we find what we look for, gastroenterologists peering through
the lens of their specialty may diagnose fibromyalgia as irritable bowel syn-
drome, while rheumatologists may diagnose an IBS patient with fibromy-
algia. Sometimes a preferred disorder seems common enough to sustain a
movement, as when a 1993 editorial in favor of PSA testing declared over
90 percent of screening-detected prostate cancers to be “serious as judged
by their volume and histologic grade.”36 By contrast, two investigators
estimated that in the highly screened population of the landmark Pros-
tate Cancer Prevention Trial, which ran from 1993 to 2003, seven detected
cancers out of eight were without significance.37 According to the FDA
analysis, 80 percent of the tumors discovered in the companion REDUCE
trial met the pathology criteria for “very low-risk disease, which indicates
that a reduction in their incidence is unlikely to be clinically significant.”38
I’ve referred to a 1968 study of the incidence of common symptoms in
healthy volunteers. As high as the frequency of reported symptoms ran, it
would have run even higher if the search had been conducted differently—if,
for example, a third of one group hadn’t been excluded from the study simply
because they took aspirin. The frequency of symptoms thus depends “on the
intensity with which the examiner searches for the symptom.”39 In the case of
both prostate cancer and depression, prevalence depends on search. Thus “the
likelihood of being diagnosed with [prostate cancer] is directly related to the
rigor with which one looks for it.”40 Employing as it did an artificially intensive
biopsy regimen, the PCPT found the disease in 24.3 percent of the placebo
group, men admitted into the study in the first place only if they were at low
risk of prostate cancer. What if men were sufficiently committed to early detec-
tion to skip PSA testing, which is after all nothing but a gateway to biopsy, and
proceed directly to biopsy itself, say annually or biannually? Even more cancer
would be found than at present; indeed, more would be found if the detection
system remained as is but more biopsy samples were taken.
Although the official checklist of symptoms of depression is so cumber-
some that doctors have trouble remembering it, it has been retained since
1980, through all the turmoil and acrimony of revision of the DSM, no
doubt because it enables the catching of cases. Such generic symptoms as
fatigue, sleep problems, and trouble with concentration alone will take you
60 percent of the way to a diagnosis of Major Depression. Add that insomnia
virtually implies fatigue and it’s easy to see why searches for depression so
often prove successful. Just as 89 percent of a large population was found to
have suffered exposure to a traumatic event according to DSM-IV criteria
for PTSD,41 it’s possible to generate high rates of Major Depression with the
BEWARE WHAT YOU LOOK FOR 153

right tests. If you want to produce the finding that a third of Americans are
depressed in a given month, simply ask people if they feel “really depressed”
once a month or more, as an ABC News poll did in 2002;42 but don’t ask
them if they feel that way all the time for a month. As it is, we’re told that one
in five Americans will be visited with Major Depression at some point, just as
one in six American men now stands to be diagnosed with prostate cancer.
The combination of a potentially serious condition, undiscriminating tools,
loose language, diagnostic fervor, and emotive publicity produces the sort of
inflation that shows up in the numbers who take antidepressants and who
have been treated for prostate cancer without clinical significance.
An example of a blunt diagnostic instrument is the questionnaire pri-
mary care physicians in New York City have been asked to administer to
patients who might be depressed. How often have they been bothered
over the past two weeks by various symptoms, including such common-
place problems as feeling tired, overeating, and a lack of “pleasure in doing
things”? According to this checklist, I would qualify for a diagnosis of
Minor Depressive Disorder if I simply had too little energy and felt too
little pleasure. Other symptoms on the list, such as “feeling down,” may
well be fitting responses to reality rather than signs of mental disorder,
though that possibility is ignored. The questionnaire casts a wide net, as if
its designers were troubled by the possibility of catching too few cases but
not too many. As simplistic as it is, however, the questionnaire is modeled
squarely on the checklist of symptoms of depression in the DSM.
The last absurdity of using checklists to fish for cases is represented by a ten-
statement test funded by Eli Lilly and posted on WebMD for a time in 2010.
The supposedly diagnostic statements read, “I feel tired almost every day”; “I
feel sad or down most of the time”; “I find myself thinking a lot about dying”;
and so on. Even if you answered No to each and every one of these proposi-
tions, you got a message advising that you “may be at risk for major depres-
sion,” for the simple reason that not everyone with depression experiences the
same symptoms. “Every individual is unique.”43 According to this idiosyncratic
understanding of risk requiring only that you be a specific person, every single
member of the population “may be at risk” of Major Depression.

Wide Nets, Rough Measures

In the absence of suitably discerning methods, the screening of large popu-


lations is bound to create problems, and so it is with PSA testing, which
something like half of eligible men now undergo. Prostate-cancer medicine
relies on Gleason scoring, a numerical rating assigned to biopsy specimens
that correlates with a cancer’s aggressiveness. The Gleason scale in use fea-
tures five categories, with the fifth representing the most severe damage of
154 THE NOCEBO EFFECT

cell architecture as observed under low-power magnification by a patholo-


gist. However, the inventor of the scale originally proposed nine, not five
damage patterns. In practice, moreover, the five remaining patterns have
been reduced to three because pathologists hesitate to use the two most
innocuous categories (1 and 2).44 Thus, of the nine Gleason categories six
have faded away. Additionally, not all of a specimen of prostate cancer will
belong to a single Gleason category, an irregularity that has to be factored
in to the assigned overall score; and on top of all this, the assignment of
a Gleason score is subject to what is professionally called “interobserver
variation,” that is, the eye of the beholder. Though anything above Glea-
son 6 is by definition outside the low-risk category, “pathologists are not
always consistent in distinguishing small Gleason 3 + 4 from Gleason
3 + 3 tumors, and in fact tumors with small foci of Gleason pattern 4 may
be indistinguishable from pure pattern 3 tumors with respect to clinical
behavior and prognosis.”45 The category of intermediate risk represented
by Gleason 7 is itself a kind of official ambiguity. (A recent study of autop-
sies of Japanese men found an astoundingly high incidence of Gleason 7
cancer even though the men had no known history of prostate cancer and
the mortality rate of the disease runs far lower than in the United States.)46
We’re reminded that a diagnostic system is a construct imposed on a reality
not to be confused for the system.
PSA isn’t specific to prostate-cancer cells and PSA testing isn’t diag-
nostic in itself, though suspect readings lead to biopsies that lead to
treatment. Like the Gleason scores assigned to biopsy specimens accord-
ing to their degree of deformation, PSA readings are numerical but far
from medically definitive. No agreed cutoff between normal and abnor-
mal PSA readings exists, the conventional boundary of 4.0 ng/mL being
“completely arbitrary” according to a urologist who had something to do
with instituting it. (“Just sort of eyeballing it, it looked like four would
be a good number.”)47 Different cut-points are used in different clinical
trials (anyone with a reading above 3.0 was excluded from the PCPT),
and cancer may be present at low PSA levels or absent at high ones. Any
given PSA threshold will involve trade-offs of sensitivity and specific-
ity, that is, false negatives and false positives. Of prostate cancer found
at biopsy, most is classified as Gleason 6, another ambiguous grade of
which most but not all is destined for indolence. It is at this stage, with
the discovery of cancer of uncertain significance, that harm to the patient
often sets in. Early detection has become a slippery slope terminating in
treatment of questionable value, often accompanied by harms the patient
would otherwise dread, most notably impotence. And yet the harms
of the PSA regime go beyond even that. An editorial in the Journal of
the National Cancer Institute cites the case of a “60-year-old man with
BEWARE WHAT YOU LOOK FOR 155

a prostate-specific antigen level above 4.0 ng/mL, who had undergone


five previous sets of biopsies, involving more than 60 individual needle
biopsies, without finding cancer. He was in tears, dwelling constantly
about the possibility of yet another biopsy.”48 Did the man know that each
biopsy carries a small but nonnegligible risk of infection?
As with the magic figure of 3.0 or 4.0 ng/mL in PSA testing, the prob-
lem of arbitrary cut-points bedevils the criteria for depression. How is it
that “in Bingo style . . . a patient who fits five out of the nine listed criteria
for depression is tagged with the disorder”?49 Why five rather than four or
six? It turns out the number is nothing but a convention,50 much like the
upper limit set for a normal PSA. Recall that the 1957 study on which the
Feighner criteria for depression were based set the threshold for secondary
symptoms at six because “it sounded about right.”51 (It strains belief that a
disorder now alleged to have a specific biochemical cause—a deficiency of
serotonin—should conform to such arbitrary guidelines.) While the Feigh-
ner criteria acquired classic status and were celebrated for putting psychi-
atric diagnosis on a firmly empirical foundation, several figures who were
in on their making report that “to the best of our knowledge, the develop-
ers of the criteria had not conducted studies to examine specifically the
validity of such key features as the proposed cutoff of five of eight criteria
for definite depression.”52 Then there’s the DSM stipulation that feelings of
sadness persisting for two weeks or longer indicate possible depression.
Why two weeks? The Feighner criteria set the symptom period at no less
than one month. Evidently, at some point in the deliberations that went
into the making of DSM-III, the Feighner threshold was deemed too strict.
(In the immediate precursor of DSM-III, the Research Diagnostic Criteria,
“the required duration of one month of [depressive] illness in the Feighner
criteria has been reduced . . . to two weeks for a definite diagnosis, and one
week for a probable diagnosis.”)53
Also according to the DSM criteria, you don’t actually need to feel
depressed (as with the Feighner criteria), but if you do, it’s not enough
to feel depressed on and off for the two-week period. You have to show
“depressed mood most of the day, nearly every day.” (The other cardi-
nal symptom, “markedly diminished interest or pleasure,” is similarly
qualified.) The secondary symptoms in the DSM lose this double speci-
fication; thus, you need only show fatigue or diminished ability to con-
centrate “nearly every day,” but not for most of the day. Not only, then,
does the DSM language conscript common symptoms into the criteria for
depression, but their threshold is set lower than seemingly more impor-
tant symptoms. The loose qualifiers for the secondary symptoms of Major
Depression, which occur widely in the population, serve as a mechanism
of diagnostic inflation.
156 THE NOCEBO EFFECT

Like the DSM criteria for depression, the Hamilton Rating Scale used
to grade depression on a scale from 0 to 51 is a less fine instrument than
it appears. If it really were a fine instrument, a difference of two points
might mean something. In clinical trials the benefit of antidepressants over
placebo comes to just that—two Hamilton points—the same quantum of
improvement that would be tallied if the patient fidgeted less while being
interviewed.54 This is a comment on the properties of the antidepressants
now being taken by 10 percent of the American population, but also on the
illusory precision of a scale calibrated in increments of one. The same vial
of blood divided in two may give different PSA readings, and a two-point
difference on the Hamilton scale may possess no more real significance
than that.
PSA isn’t specific to prostate cancer, and sadness isn’t specific to depres-
sion. A critical flaw of the Hamilton Rating Scale is that it ignores the
sources from which sadness arises, leaving open the possibility that some-
one gloomy for a good reason may qualify as a case of depression and a
candidate for treatment, along with the side effects of treatment. As crit-
ics have charged, the Hamilton scale and the practices that have grown
up around it pathologize normal sadness. An example of such a normal
response to events themselves is the depression that sometimes descends,
if only for a while, on those diagnosed with prostate cancer—a “risk of
diagnosis” cited in the literature. Until recently, the clinicians of sadness
did allow an exception for grief for a lost loved one, though even here the
arbitrary enters in, for if mourning extended beyond two months it was
counted as pathological. (Coincidentally, this seems about the same length
of time Hamlet has been in mourning—“But two months dead, nay, not so
much, not two!”—when he is reprimanded in front of the court for griev-
ing overlong.) How the figure of two months was arrived at by the APA I
don’t know, but it reads like a compromise between not allowing a grief
exception and allowing a more liberal period of mourning, which might
limit the pool of candidates. So bold is psychiatry’s claim to cognizance
over human life that in DSM-V grief is declared a dangerous “psychoso-
cial stressor”55 warranting careful medical surveillance and, if necessary,
intervention.

Early Detection

A similar spirit of vigilant activism powered the PSA revolution, which


from the beginning employed the mobilizing rhetoric of early detection.
“Early detection saves lives,” went the rallying cry, well before the evidence
could have shown that PSA testing did any such thing (though the fallacies
by which mass screening creates the illusion of saving lives were known).
BEWARE WHAT YOU LOOK FOR 157

When the mixed evidence of clinical trials of PSA finally came in long after
mass screening for prostate cancer had become self-perpetuating, the mor-
tality benefit of PSA testing remained unclear, although the human costs
of the overtreatment of prostate cancer had long since become undeni-
able. Indeed, the European Randomized Study of Screening for Prostate
Cancer (ERSPC), which found a reduction of prostate-cancer deaths as a
result of screening (though no reduction in overall mortality), also found
that for every death averted, 48 men would have to be treated over nine
years.56 Using the language of risk/benefit calculation, urological medicine
had come to rely on a mode of screening whose benefits were unclear but
whose harms certainly weren’t. Both PSA testing, which appeals to evi-
dence presumed to exist, and testing for depression, which appeals to diag-
nostic criteria conceded by the designer of the DSM-III to be seriously
defective (just as Horwitz and Wakefield allege),57 strain the very process
of weighing evidence.
At the same time as the PCPT tested the possibility of preventing a
common cancer with a drug already in use for other purposes (finaste-
ride),58 it was proposed that people who have recovered from an episode
of depression take an antidepressant to prevent another onset.59 Also in
parallel with cancer rhetoric, advocates argued that screening and only
screening could catch depression in its early stages and prevent it from
progressing. “Unless brought into treatment,” it was said, “people who
meet symptomatic criteria [for depression] may develop chronic, recur-
rent, and deteriorating conditions.” So it is that a concerted effort was
made to identify members of the population who were depressed but
didn’t seek treatment, possibly because they failed to understand that
they were depressed.

Fearing that there was an unmet need for mental health services among peo-
ple who might not even recognize that they were suffering from a disorder,
policy makers . . . placed a high priority on finding ways to identify people
with untreated disorders in the community and bring them into treatment.
And it was decided that if people would not come in for diagnosis, then
diagnosis must go to the people.60

Like those who hunt for given patterns in literary works and inevitably
find them (because the ambiguity of literature gives their preoccupation
something to feed on), those looking for depression are predisposed to find
it, and do find it.
In the case of both prostate cancer and depression, the logic of early
detection leads to a push for earlier detection and lowered thresholds. In
the latter case this means looking not only for Major but Minor Depres-
sion, in which only a few of the listed criteria must be satisfied—an
158 THE NOCEBO EFFECT

enlargement of an already wide net. In the example given above, I qualified


simply by lacking energy and not sleeping well over most of two weeks.
In recent years many have also campaigned for lowering the number of
symptoms required for Major Depression. In the case of prostate cancer
the intensification of early detection means looking not only for cancer per
se but precancerous lesions. Where authorizing subthreshold conditions
such as Minor Depressive Disorder enables the diagnosis of transient dis-
tress as a mental disorder, the search for precursors of prostate cancer will
bring to light neoplasms that wouldn’t have progressed to the next stage of
malignancy.
Early detection is not only a principle but a drive, potentially a move-
ment, building on itself; appropriately, it has given rise to promotional
campaigns and something resembling actual social movements. As diag-
nosis of depression went to the people, so PSA testing has been offered
in neighborhood clinics, workplaces, shopping malls, parking lots, buses,
and churches (though the model of community screening was imported
in the first instance from the culture of breast cancer, also an ambiguous
condition overdiagnosed as a result of screening, and also blanketed with
emotive publicity). Additionally, just as the portrayal of depression as an
insidious disorder potentially invisible to its own victim gives it a resem-
blance to prostate cancer symptomless in its early stages, the specter of
mild depression evolving into something worse portrays it as a psycho-
logical malignancy. According to the Suicide Crisis Center, depression
is “just like cancer: if you don’t discover it, if you don’t treat it, it will
get worse and may kill you.”61 Finally, while depression screening may
be imposed on patients for their own good, PSA testing is sometimes
folded into a man’s blood-work without his knowledge or otherwise car-
ried out in violation of informed consent, despite the affirmation of that
principle on paper by professional bodies like the American Urological
Association.
According to one of the original proponents of PSA testing, Dr. William
Catalona (then of Washington University Medical School, also the intel-
lectual epicenter of the diagnostic psychiatry movement),

The advantages and disadvantages of PSA testing should be explained to


patients, but this does not need to take the form of a formal signed consent
form . . . Requiring a signed consent form before PSA testing could be harm-
ful if it discouraged PSA testing, either because it was too time consuming
or it presented the issues in an unbalanced way. An important drawback
of informed consent is the time required explaining the controversy in the
setting of a busy clinical practice . . . It would be more convenient for a phy-
sician to be able to check off a PSA test as a part of the routine laboratory
testing without having to go through a formal consent process.62
BEWARE WHAT YOU LOOK FOR 159

It appears many doctors feel the same way. “Studies have shown that up to
one third of men screened for prostate cancer were unaware that they were
being tested,”63 contrary to the promotion of what’s called awareness by
advocates of PSA testing.

Awareness

The now-canonical association of awareness with everything civic and


healthful received a lift from Martin Luther King’s theory of nonviolent
protest as a kind of theater designed to compel a sick society to recog-
nize a reality it has chosen to ignore. Since King’s time, campaigners of all
descriptions have appropriated the connotations of awareness as a good
impossible to question and a power impossible to oppose, and among
these campaigners have been the advocates and organizers of efforts to
screen the population for depression on the one hand and prostate cancer
on the other. In both cases the public is alerted to the existence of a dis-
ease that is all at once prevalent, dangerous, and potentially invisible, but
which, despite its invisibility, can in theory be identified medically before it
advances to something worse.
The NIMH-sponsored Depression Awareness, Recognition, and Treat-
ment program was launched in 1987, and Prostate Cancer Awareness
Week—eventually to become, by inflation, Prostate Cancer Awareness
Month—in 1989. In both instances the rhetoric of awareness fueled a cru-
sade in which the imperative of action distorted thought. In PSA testing
this effect is seen at all levels. Men seem reassured by the test regardless of
its outcome: A “normal” result is greeted with relief, while an “abnormal”
result that leads to a finding of cancer produces relief that the cancer was
caught. PSA testing generates no outcome that doesn’t confirm the testing
regime, no matter how faulty it’s known to be.64 Similarly, the immedi-
ate skyrocketing of detected cancer with the introduction of PSA testing
didn’t deter men from getting tested but, on the contrary, seemed to prove
the importance of mass screening. Arguing in 1997 for a postage stamp
to raise funds for prostate-cancer research, Sen. Olympia Snowe declared
that “Between 1989 and 1993, the prostate cancer incidence rate increased
by 50% . . . A stamp designed to garner additional research funds would
not only help the hundreds of thousands of men who suffer from prostate
cancer, but would also remind men to seek regular screening.”65 Of course,
it was the advent of PSA testing itself that drove the surge in the incidence
of prostate cancer, which isn’t an infectious disease. Somehow, the overdi-
agnosis that flows directly from screening served to advertise the urgency
of screening. (Many indeed take the intuitive position that the increase in
diagnoses following the institution of a screening test proves the worth of
160 THE NOCEBO EFFECT

the test.) Organizations that originally promoted mass screening for pros-
tate cancer, such as the American Cancer Society and the AUA, have since
taken note of the harms that followed from such an indiscriminate practice
and have belatedly scaled back their recommendations.
Just as advocates of mass PSA testing point to the legions diagnosed with
and treated for prostate cancer as evidence that it saves lives, psychiatrists
defend the categories of the DSM “by pointing to the vast numbers of North
Americans they have identified as suffering from the afflictions catalogued.”66
In the case of depression, inflated estimates alone have served rhetorically as
proof of urgency. Going back decades, such figures eventually realized them-
selves in the inordinate use of antidepressants. But the translation of inflated
numbers into cases began with the estimates themselves, because as soon as
community-based screening for depression is introduced, “the trend is for
the costly second-stage diagnostic screens to be eliminated or reduced and
for the minimal prescreen itself to become the basis for diagnosis and treat-
ment procedures.”67 (Somewhat analogously, blood-pressure readings given
in supermarkets and drug stores are often not followed up even though a
solitary reading can be misleading.)68 While prostate-cancer medicine can’t
correspondingly omit the second stage (biopsy)—because PSA alone doesn’t
really indicate anything—a great many cases of treated prostate cancer
constitute false positives in their own right, in that they would never have
progressed if left untreated. At this point there is some evidence that mass
screening for prostate cancer has reduced disease-specific mortality (though
improved treatments have also contributed), little evidence that it has led
to reduced mortality overall, and questionable evidence that screening for
depression improves outcomes.
Precisely because depression and prostate cancer shade off into nor-
mal conditions, it’s possible to diagnose more and more cases; hence, for
example, the hubristic estimate of the World Health Organization that
depression is soon to become the second leading cause of disability across
the globe, if it isn’t already at the top of the list.69 However, practices that
aggressively inflate the prevalence of depression not only don’t do good,
but may harm. As Horwitz and Wakefield reasonably contend, even to be
preliminarily diagnosed as depressed only to be cleared by further testing
“creates a space of pathological possibilities that did not previously exist.”70
Newly aware, I wonder if I might be carrying the cancer of depression
without realizing it, which makes it that much more insidious. Ill-founded
diagnoses of depression can also come back to haunt in applications for
health insurance, custody hearings, and other settings.
Among the noxious possibilities introduced by the overdiagnosis of
depression is a lingering worry over the label after depression has resolved,
as it may do within weeks after detection. Overdiagnosed prostate cancer
BEWARE WHAT YOU LOOK FOR 161

lingers in a different way. Even as professional bodies qualify their recom-


mendations of mass screening in the face of undeniable evidence of harm,
they continue to urge screening for those with a family history of prostate
cancer. Thus, the sons of the million and more men treated for prostate
cancer of no medical significance in the PSA-era remain subject to PSA
testing just as their fathers were, though because the sons are now identi-
fied as at “high risk,” the tests may begin even earlier and use lower cut-
points, with all that this predictably entails. Nowhere do the more guarded
PSA recommendations and guidelines now in effect acknowledge that the
harms that necessitated scaling back PSA testing have been grandfathered
into the new regime.71

Emotive Advertising

Even if the condition screened for is profoundly ambiguous and the


screening procedures and instruments unreliable, this alone isn’t enough
to generate a rise in incidence that gives the impression of an epidemic. For
that to happen, the general public—we ourselves—have to get caught up
in the diagnostic ferment. Both of the conditions discussed here received
the necessary propaganda boost: depression by the acclamation of Prozac
as a miracle drug and (following the approval to DTC advertising ten years
later) by a never-ending parade of ads for antidepressants on television
and elsewhere; prostate cancer by the publicity services of Gen. Norman
Schwarzkopf as well as such public-relations exercises as the issue of a post-
age stamp in 1999 with the legend, “Prostate Cancer Awareness / Annual
Checkups and Tests”—for Sen. Snowe’s argument carried.
By defining common ills as a mental disorder and erasing the line
between sadness and a clinical condition, drives for Depression Aware-
ness have opened up large possibilities of overdiagnosis, brought medi-
cine into the agora, established the principle that you can be depressed
without knowing it, and driven home the message that it’s better to get
treatment than suffer in silence, all of which are now being exploited com-
mercially. Conveying benefits only marginally beyond placebo in most
cases, the antidepressants celebrated in advertising and popular lore play
on the fallibility of our own experience. The strongest advertisement for
prostate-cancer screening is the testimony of men claiming the authority of
experience who maintain that it saved their life, and yet if everyone treated
for screening-detected prostate cancer had his life saved, the disease’s death
rate would be far higher than it was before screening. Tellingly, the policy
Horwitz and Wakefield recommend to doctors confronting what might or
might not be depression has the same name as the practice of not immedi-
ately treating prostate cancer: “watchful waiting.”72
162 THE NOCEBO EFFECT

But while screening for prostate cancer and screening for depression
mirror one another in some detail, this isn’t to say that urology and psy-
chiatry are engaged in mutual imitation like next-door neighbors. Psychia-
trists and urologists work at different ends of the human animal. Urological
activism is in fact patterned on its breast-cancer equivalent, which supplied
the model and precedent for mass screening, just as mammography pre-
dated PSA testing.73
To enforce the urgency of timely treatment, a poster during World War II
reminded Americans that more of them died every two weeks of cancer diag-
nosed belatedly than died at Pearl Harbor.74 Playing to the intuitive notion
that cancer cells are destined to progress inexorably, messages like this made
the value of early detection seem incontestable and self-evident. Mammog-
raphy couldn’t have established itself in American life without decades of
such publicity behind it, publicity appealing powerfully to hope and fear.
In the event, though, mammography has proven more effective at detect-
ing cancer of doubtful significance than at preventing cases of advanced dis-
ease, whose incidence remained virtually constant over the mammography
decades. According to epidemiological data, the rising incidence of breast
cancer since the 1970s is “driven almost exclusively by changes in the pro-
portion of early-stage disease, with almost no observed differences in the
incidence of late-stage disease over a period of 30 years . . . The inference
is that there are now more new cases of early-stage disease being identified
[through mammography] than cases of late-stage disease being prevented:
this represents overdiagnosis.”75 A meticulous evaluation of mammography
found its benefits “modest” and its harms “significant,”76 not the ratio one
would expect of a medical practice that has become an institution.
In the climate of overcharged publicity surrounding mass screening,
detection must intercept the advance of disease, and the dramatic rise of
incidence as a result of screening reads like a powerful argument in favor
of screening. Screening propaganda maintains silence on the definitional
issues, biological ambiguities, borderline cases, and conventions of diagno-
sis that make breast and prostate cancer, or indeed depression, as common
as they now are. It’s also silent on the harms of screening itself, harms that
may account for the failure of either breast- or prostate-cancer screening
to reduce all-cause mortality in most studies, regardless of their effect on
disease-specific mortality.77 Even if cancer screening saves lives, it may
also be costing lives—in which event all-cause mortality could remain
unchanged. In the Malmö (Sweden) mammography study, “evidence for
an excess cardiovascular mortality in the screened group was found .  .  .
which more or less offset the mortality gain from screening. The possibility
that the stress of screening and of positive diagnoses contributed to this
cannot be ruled out.”78 Less conjectural is the case of a man who died as an
BEWARE WHAT YOU LOOK FOR 163

eventual result of prostate-cancer screening, but whose death was officially


recorded as due to a more proximal cause, as chronicled in Otis Brawley’s
How We Do Harm.79 Just as the spotlights flooding a stage have the effect
of casting what is unlit into darkness, the bright lights of publicity serve to
black out deaths like this one that result, however indirectly, from screen-
ing. Medicalization is sustained by such fallacies of salience.

Activism and Evidence

While men getting screened for prostate cancer are strongly motivated and
patients now ask for antidepressants without the formalities of diagno-
sis, the fact remains that neither of the pseudo-epidemics discussed here
would be possible without medical activism. The ambiguity of the target
condition, the unreliability of diagnostic instruments, and emotive public-
ity represent the ways and means of such activism: ambiguity supplying a
field of opportunity, imprecise instruments lending themselves to indis-
criminate detection, and promotional campaigns generating uptake. To the
spirit of activism the commonness of prostate cancer on the one hand and
sadness on the other represents not a caution against mass screening but
a call to arms. Without activism, screeners wouldn’t have gone out into
the community searching for depression, and without the inflated esti-
mates of depression that followed, the market for antidepressants would
lack medical legitimacy. Without activism, PSA testing wouldn’t have been
offered to millions of men with the promise of a mortality benefit that is
still—25 years later—unclear, nor would the American Urological Associa-
tion have found itself in the paradoxical position of endorsing PSA testing
even though, by its own estimate, it may actually yield a net harm. The
same spirit of activism screens in churches for high cholesterol and pros-
tate cancer itself, and now advocates general screening for autism despite
the amorphousness of the condition, the variety of diagnostic instruments,
the openness of diagnostic criteria such as a lack of “social imagination,”
and the absence of proven treatments.
While the likelihood of finding prostate cancer depends on how hard
you look for it, medical activism implies more than an energetic search
for evidence: It implies an expectation of finding it and a disposition to
interpret equivocal data accordingly. Medical activism is the leavening that
allows the evidence of a pseudo-epidemic to rise and expand. Much as crit-
ics look for their favorite patterns in works of literature in the assurance
of finding them, medical activism anticipates its own conclusions. In the
immediate aftermath of the September 11 attacks, a number of therapists
“planned to approach citizens on the street [in New York City] and conduct
quick sidewalk assessments and brief interventions for those presumably
164 THE NOCEBO EFFECT

too avoidant to seek help on their own.”80 (The innocence of the interven-
tions is taken for granted.) Given that these counselors assumed a desper-
ate need for psychological first aid, such all-out screening for indications
of PTSD would probably have found what it was searching for—provided
passersby would submit to screening. Like these activists, the members
of the depression-screening movement who took diagnosis to the people
did so not without preconceptions, but, on the contrary, with a definite
expectation of finding high rates of depression. As Horwitz and Wakefield
put it, they “feared that there was an enormous unmet need for mental
health services among people who might not even recognize that they were
suffering from a disorder.” Their findings confirmed their fears. Perhaps a
corresponding fear of leaving anyone out has fueled successive editions of
the DSM.
The chair of the DSM-IV Task Force has detailed, one by one, the diag-
nostic disasters that followed from its provisions, often blaming the drug
companies for exploiting possibilities the authors of the document hardly
knew they were creating. If we ask how intelligence and good will could
possibly have fashioned a document that gave rise to so much harm, the
answer can only be that the writers were misled by their own zeal—by the
felt imperative of specifying each and every malady of the mind so that all
of it could be brought under enlightened management.

Signs of Hope

In a psychology experiment sketched earlier, subjects underwent a sham test


for an enzyme deficiency and were then questioned about the result they
were fed, all with the aim of understanding defenses that get in the way of
information about health risks delivered to the general population. One of
the principal findings was that subjects deem a common disorder less serious
than a rare one. While this study, like so many others, seems to look down on
popular misconceptions, it concedes that the inference from commonness is
“not an altogether unreasonable decision strategy.”81 In point of fact, the sub-
jects who tested positive for the sham deficiency and were led to believe their
condition was common, were on to something when they concluded that
it wasn’t serious. A prevalent condition in a healthy population like that of
the experiment is most unlikely to be a serious one. If there were nothing to
this position—if it were just a mistaken intuition of something we call com-
mon sense, or, worse, a mechanism of denial—there would be no cause for
concern in scouring the male population for a disorder like prostate cancer
whose occurrence far exceeds its mortality.
Recall that in the low-risk population of the PCPT over 24 percent of
the placebo group was found to have the disease. According to the PCPT
BEWARE WHAT YOU LOOK FOR 165

protocol, subjects were biopsied if their PSA rose above 4.0, but addition-
ally, at the completion of the trial the men were asked to undergo an end-
of-study biopsy (that is, a research biopsy) even if no previous biopsy had
been performed, their PSA hadn’t risen, and other signs were normal. The
lion’s share of the thousands of biopsies performed in the PCPT were in
fact performed thus, not for cause. Predictably (given everything known
about the prevalence of prostate cancer), the research biopsies detected
hundreds of cancers. What to make of these malignancies that would have
remained latent but for the investigative demands of a clinical trial?
Examining the PCPT data, FDA reviewers threw out the results of the
research biopsies as essentially meaningless. “FDA regards the informa-
tion from ‘end of study biopsies’ to be related to study conduct and not
reflective of clinical practice.” Furthermore, “the primary efficacy results
for the PCPT are driven by the ‘End of Study’ biopsies and therefore raise
questions regarding the applicability of the results to the current standard
of care for management of healthy middle-aged and elderly men with no
clinical evidence of prostate cancer.”82 But years before the FDA reviewers
came to this cogent conclusion, some thirty-nine hundred men, almost a
quarter of those enrolled in the PCPT, decided there was no good reason to
subject themselves to a research biopsy and refused to have one. While the
PCPT hit a predicted 25 percent reduction in cancer incidence almost dead
center (at least until the FDA discarded some of the trial’s data), the study
designers also predicted that only 5 percent of participants would refuse to
be biopsied without cause. As they note, “The rate of refusal of biopsy was
higher than had originally been estimated.”83
Following the lead of the original paper on the PCPT, the medical lit-
erature simply reads the refusers out of the study, but like many others
who figure only parenthetically or as ignored subtexts in medical papers
(or like the 50 percent of male internists who don’t have PSA testing),84
they serve as examples of people who had the spirit to decline the ques-
tionable overtures of activist medicine. As in the PCPT, the numbers of
refusers are far from negligible. Contrary to the zeal of therapists offering
psychological first aid, it appears that only about 10 percent of trauma sur-
vivors seek help; considering that a common form of aid, Critical Incident
Stress Debriefing, has yielded questionable results in controlled trials, such
widespread refusal is probably a good thing. In 2006 it was reported that
“30–60% of patients in primary care decline to participate in clinic screen-
ing interviews [for depression] offered by researchers or clinic nurses dur-
ing routine attendance.”85 In a study that looked for evidence that a fear of
being stigmatized would keep people from seeking treatment for depres-
sion, fully two-thirds of those found eligible chose not to participate.86 As
for those who have simply “thrown [their antidepressants] down the toilet
166 THE NOCEBO EFFECT

when they felt better and experienced no subsequent ill effects,”87 no one
knows how many they are. (Recall, though, that as many as 70 percent of
those prescribed antidepressants prove noncompliant.) In diverse ways, all
such refusers remind us that the trend toward medicalization is neither
inevitable nor incontestable.88
In a study looking into adherence to prescribed antidepressants, 49
percent of those eligible refused to participate, and, of those who did,
another 17 percent were lost in the course of the study. Among the 147
completers, only 19 percent took antidepressants as prescribed over a
period of six months. It was this study that introduced us to Ms. A, the
patient in shock over the sudden death of her mother who was prescribed
antidepressants against her wishes and never filled the prescription.
According to the authors’ calculations, patients with misgivings about
antidepressants like Ms. A’s have a 2 percent probability of adherence
over six months.89
Refusers send a message. In a large British trial of drug treatments for
mild hypertension, 44 percent of the men withdrew, presumably because
of a high rate of side effects including impotence. Almost as many women
withdrew, and in doing so they may have benefited more than they knew—
among women in the treatment group, the death rate rose.90 At times cir-
cumstances themselves counsel refusal. Patients diagnosed with dementia
may lose not only their insurance and driver’s license but their indepen-
dence, even their sense of self; little wonder that as many as half of those
screening positive for cognitive impairment—a common condition that by
no means sentences a patient to Alzheimer’s disease—may refuse any fur-
ther evaluation.91
Maybe we can count as implicit refusers those who don’t seek medical
care for ordinary problems at all. In 1991 two investigators of the way lay
people think of illness concluded, “It is apparent from the high frequency
of self-recognized illness episodes and the correspondingly low frequency
of medical consultation that contemporary sufferers tend to perceive their
afflictions as private and individualistic occurrences, which are readily
managed outside the realms of the formal medical-care system.”92 In this
context the tag-line of drug ads, “Ask your doctor,” reads like an effort to
nudge people into the formal medical-care system who might otherwise
just look after themselves. As the cited discrepancy suggests, such people
may be many. Wrote a British psychiatrist in 2008:

In 1996, just before the Royal Colleges of Psychiatrists and General Practi-
tioners began their “Defeat Depression” campaign, they surveyed lay peo-
ple’s attitudes to depression and its treatment. What they found was broadly
subversive to the basic assumptions driving the campaign (though they
BEWARE WHAT YOU LOOK FOR 167

didn’t let this put them off): most people did not subscribe to a depression-
as-disease model, and saw things in terms of situational problems which
were not something to take to the doctor.93

If ordinary symptoms represent a bounty of possibilities to those with an


interest in their exploitation, the possibilities will go unrealized unless
people can be made to forego their customary ways of interpreting and
managing ills, including depression.
Doctors themselves take actions resembling noncompliance. Preserv-
ing in principle the distinction between a situational sadness and one that
seems to lack external causes, they kept the term “endogenous depression”
in medical usage even though it was written out of DSM-III.94 The hege-
mony of the DSM is incomplete, it seems. Doctors may decline to diag-
nose depression even if the DSM criteria are met, as in a 1994 study where
half the primary-care doctors surveyed diagnosed something other than
depression despite a patient’s apparent conformity with DSM criteria,95 and
despite the trend toward converting clinical judgment into the application
of guidelines. The doctors had good reason not to jump to the diagnosis of
Major Depression in that such a diagnosis once made can’t be unmade, the
label is highly suggestive, and the patients may not think of themselves as
suffering from a disorder or disease at all. In the UK, it seems, many GPs
who consider themselves patient-centered will diagnose depression only at
the suggestion of the patient, a practice derided by critics as “taxophobia.”96
False negatives being of greater concern to medicine than false positives,
the importance of case-finding is emphasized in the literature much more
than the risks of overzealous diagnosis.
As we know, it’s a refrain of the literature that something like half of all
cases of depression go unrecognized in primary care, the ready explanation
being that mental disorders take the doctors out of their element. Noting
that “50% to 70% of depressed patients will present with somatic rather
than psychological complaints,” a team of authors comments that

Patients may believe or hope that something physical is wrong, the cause
will be found, and they will be healed. Because of stigma issues, there may
be a potent investment on the part of the patient in keeping the focus on the
somatic complaints. The physician, too, may feel more comfortable in the
physical realm, and the assessment will emphasize these complaints.97

On this showing, the doctor who fails to diagnose depression when the
patient doesn’t complain of it ignores the obvious because she is trapped
in her comfort zone. However, it may be that the doctor refrains from
making tendentious inferences about the patient or hesitates to impose a
diagnosis that can’t be retracted for a condition that often wanes, or both.
168 THE NOCEBO EFFECT

Considering that “eighty percent of prescriptions [for antidepressants] are


written by primary-care physicians with little training in their proper use,
under intense pressure from drug salespeople and misled patients, after
rushed seven-minute appointments, with no systematic auditing”98—
considering all this, the surveyed primary-care doctors who failed to diag-
nose depression may stand as encouraging examples of people who did not
do what comes only too easily.
With all this in mind, it’s worth glancing back at K. B. Thomas’s
1987 study of two hundred patients who presented with symptoms that
couldn’t be traced to any underlying cause.99 The most common of these
were cough and sore throat, but if we aggregate the various pains listed
separately—abdominal pain, back pain, leg pain, etc.—pain itself becomes
by far the predominant complaint. Now recall the claim that primary-care
doctors tend to miss depression because it often presents itself under the
guise of common symptoms, including pain, with no detectable cause. (In
the Spitzer et al. study of common symptoms seen in primary care, depres-
sion was diagnosed in over 50 percent of each category of pain complaints
judged to be somatoform, that is, physically unexplained.) The only treat-
ment administered in the Thomas study was reassurance, supplemented
in half the cases by a placebo pill. While most of the reassured patients
duly improved, the revealing statistics for present purposes are that 90
percent of those who received no treatment except reassurance reported
on a questionnaire that they were “very well able” to tell the doctor about
their problem, and fully 94 percent reported that the doctor understood
their problem “very well.” One doubts the patients would have been quite
so satisfied with their rapport with the doctor if he’d told them they were
depressed without knowing it.
7

The Folly of Systems:


The Satiric Tradition and
Mental Disorders1

Nature and Boxes

Implying as it did a liberation from habitual patterns, the notion of the


paradigm shift captivated the utopian imagination of the 1960s. It was
introduced in the same decade, before the outbreak of the student revolt,
by Thomas Kuhn’s landmark study of discontinuities in the theory and
practice of the natural sciences, The Structure of Scientific Revolutions.
As suggested both by the desire to give psychiatry a fresh start that
inspired DSM-III and by the crusade against sadness launched in its name,
the work that authorized the surge of diagnosed disorders over the past
three decades has a streak of utopianism. (The ambition of computeriz-
ing the diagnosis of psychiatric disorders “still sounds somewhat Utopian,”
wrote one of the makers of DSM-III in 1988, “but much of the groundwork
has been accomplished.”)2 It’s also the result of an explicit paradigm shift:
the overthrow of the psychodynamic model of mental disorders in favor
of the professedly more reliable symptom-based model that now governs.3
The Freudian or quasi-Freudian model in which diagnosis varies according
to the interpretive bent of the practitioner and treatment, if that’s what it
is, proceeds laboriously—this model simply doesn’t lend itself to the sort
of explosive growth seen in the mental health professions and the popula-
tion of the diagnosed since the advent of DSM-III in 1980. In and of itself,
the repudiation of the Freudian underpinnings of psychiatry was also a
clear gain for utopianism, for according to Freud much of our conduct and
mental life is determined, leaving the possibilities of happiness open to us
limited. Wrote Freud in Civilization and Its Discontents, “We may expect
to carry through such alterations in our civilization as will better satisfy
170 THE NOCEBO EFFECT

our needs . . . But perhaps we may also familiarize ourselves with the idea
that there are difficulties attaching to the nature of civilization which will
not yield to any attempt at reform.”4 That the world is in some way beyond
reform isn’t a message utopianism wants to hear.
What happens when the dust of war settles and a new paradigm rules, as
the biomedical concept of mental disorder ruled once the psychodynamic
model was officially deposed? As Kuhn explains, there ensues a return to
normality. The revolution is consolidated and routine work begins on sets
of problems brought to the fore by the new conceptual regime.

Few people who are not actually practitioners of a mature science realize
how much mop-up work .  .  . a paradigm leaves to be done or quite how
fascinating such work can prove in the execution. And these points need
to be understood. Mopping-up operations are what engage most scientists
throughout their careers. They constitute what I am here calling normal sci-
ence. Closely examined, whether historically or in the contemporary labora-
tory, that enterprise seems an attempt to force nature into the preformed and
relatively inflexible box that the paradigm supplies.5

If shattering a paradigm means breaking out of a box, a new paradigm


seems to mean a new box.
Forcing nature into a box has become a semi-literal activity over the
decades since the symptom-based model of mental disorders was enshrined,
an activity that has withstood all challenges to and revision of the DSM.6
For what DSM-III and its successors brought in was the checklist style of
diagnosis, according to which a certain number of ticked boxes equals a
clinical finding. Made for standardization, this businesslike diagnostic style
is plainly much better adapted to the rapid expansion of medicine than its
Freudian counterpart, which in comparison looks like unmethodical hand-
craft. The charge leveled against existing diagnostic practices by the makers
of the DSM-III revolution was that they didn’t distinguish the well from
the ill.7 If the intent of DSM-III et al. was to clarify that distinction they
succeeded in reverse, transforming normal conditions into medical ones in
a wholesale manner, justifying the prescription of psychoactive drugs on a
mass scale, and ultimately extending the DSM’s writ to every cranny of life.
Among the critics of the inordinate expansion of DSM categories is the
founder of the DSM system, Robert Spitzer, coauthor of a 2008 critique of
the proposed extension of PTSD to cover patients allegedly traumatized by
a visit to the dentist, rude comments in the workplace, and similar absur-
dities. In suggesting that PTSD itself may be nothing but a compound of
other diagnoses, unsurprisingly including depression, Spitzer and col-
leagues offer the example of the captain of a fishing vessel who either is or
isn’t traumatized as a result of an accident at sea.
THE FOLLY OF SYSTEMS 171

Consider . . . the case of a boat captain whose fishing vessel is lost at sea,
resulting in the death of several crew. Though not physically injured, the cap-
tain starts feeling “on edge,” suffers from insomnia and begins to withdraw
from usual activities. Most alien to the fisherman’s self-concept, he becomes
anxious when considering a return to his usual occupation. Consequently,
he turns down offers to work on other vessels, and he becomes isolated
from the fishing industry. Without income, this man becomes increasingly
anxious and depressed. Prior to the introduction of PTSD in 1980, a psy-
chiatrist would have conceptualised this fisherman’s problems, first, as nor-
mal bereavement over lost friends who died in the incident, and second,
as a phobic disorder caused by the traumatic event. A third concern would
have addressed the development of situational depression as a consequence
of adjustment issues and the fisherman’s inability to return to sea. Now, in
our post–DSM-III era, we can ask whether the introduction of PTSD has
furthered our understanding of this patient’s reactions to a life-threatening
event.8

But we can also ask exactly what’s gained by checking boxes that say “pho-
bic disorder,” “adjustment issues,” or whatnot, other than the illusion that
official labels bring the captain’s catastrophe under professional cognizance
and management. In short, what’s the captain doing in a psychiatrist’s office
at all?

Artificial Lines

Now in its tenth edition, the International Classification of Diseases seems


to be expanding toward infinity, with codes for whale bites, sibling rivalry,
injuries that occur in opera houses, and innumerable other contingencies.9
What are we to make of the obsession with classification that also drives
the DSM, with its proliferating subsections and insurance codes? Medicine
originally grew interested in schemes of classification because it was only
too aware that human perception and cognition could not get to the actual
causes of things; to arrange the data that does present itself is all that we’re
capable of, at least for the time being. This line of thinking got started with
Locke and his friend Sydenham, the latter of whom advised investigators
“to classify disease like plants, according to their external characteristics, in
view of the impossibility of penetrating their substance.”10 Among Syden-
ham’s successors in the eighteenth century there was a hope that a sys-
tematic classification of diseases would at least foster progress by allowing
doctors to communicate with each another. Except that the triumph of the
DSM system obscures the deficiency of knowledge that underlies it, the
DSM stands in the tradition of these early nosological efforts. From clas-
sifying diseases according to external characteristics we pass to classifying
172 THE NOCEBO EFFECT

disorders according to their symptoms. The hope that an empirical clas-


sification of mental disorders would give researchers a common lexicon,
thereby enabling communication, was high on the list of aims that inspired
the construction of DSM-III.
A risk of the DSM project, therefore, is that a kind of shared code will
support the standardization of diagnosis, which in turn reinforces the
code. Observes Robyn Dawes, the classification system of DSM-III

is justified not by showing that these [classifications] result in categories that


allow us to accurately predict how people will behave with or without dif-
ferent treatments, but by demonstrating that when diagnostic experts are
sufficiently well “trained” in using the manuals, they unsurprisingly agree
about how to label people.11

In fine, the DSM allows professionals to speak the same language and
check the same boxes. A member of the DSM-III Task Force agrees but
goes perhaps even further:

Validity has been sacrificed to achieve reliability. DSM diagnoses have


given researchers a common nomenclature—but probably the wrong one.
Although creating standardized diagnoses that would facilitate research was
a major goal, DSM diagnoses are not useful for research because of their lack
of validity.12

The project of basing a classification system on symptoms risks build-


ing error into the system, simply because symptoms refer not to entities
but experiences. While the case can be made that medicine lost something
by focusing on laboratory signs to the neglect of symptoms,13 for pres-
ent purposes the important point is that the systematic enumeration of
symptoms in the DSM gives them an appearance of specificity they often
lack. A diagnostic system like that of the DSM, whose operational criteria
are symptoms, may find that its building blocks don’t stay in place. While
Female Sexual Arousal Disorder as codified in the DSM certainly sounds
like a distinct and specific entity, it’s bound up problems beyond arousal.
“Women do not commonly experience FSAD alone because either arousal
and desire tend to occur simultaneously in women or, alternatively, both
may be absent.”14 The symptoms of female sexual dysfunction “overlap and
can even be interrelated,”15 and the same is true in other domains. How
could Conduct Disorder, Oppositional Defiant Disorder, and ADHD be
specific entities if in practice the three diagnoses overlap to the extent that
many question the point of distinguishing among them?16 For that matter,
how is it that according to the latest iteration of the DSM, ADHD requires
six approved symptoms (for those over 17, five), Oppositional Defiant
THE FOLLY OF SYSTEMS 173

Disorder four, and Conduct Disorder three? A member of the DSM-V Task
Force was quoted in the press as saying, “We’re basically drawing artificial
lines, and the body and mind do not work like that.”17
Arbitrary distinctions haven’t only recently crept into the DSM, how-
ever: They’ve been there for decades. Almost a quarter century ago the
Lancet noted the capriciousness of temporal requirements in the DSM sys-
tem, pointing out that

the minimum duration of the symptoms necessary before making a diagno-


sis varies between the extremes of panic disorder, in which one panic attack
can be sufficient to trigger off the diagnostic requirements for the disorder
if it is followed by persistent fear of having others, and dysthymic disor-
der, in which depressive symptoms have to be present for most of the previ-
ous two-year period . . . The diagnosis of major depressive episode requires
depressive symptoms to have been present for two weeks, but for its anxiety
equivalent, generalised anxiety disorder, symptoms have to have been pres-
ent for most of the previous six months to qualify for the diagnosis.

The editorialists end on a satiric note: “Come back tomorrow, Mr Smith.


Today you fail to qualify for diagnosis, treatment, or insurance cover.
Tomorrow, however, if your symptoms persist, I will be able to help you.”18
The statutory duration of depressive symptoms is open to debate—recall
that the Feighner criteria set the period not at two weeks but a month—and
so is much else about the criteria and concept of Major Depression. Accord-
ing to a predecessor of the Feighner criteria, a diagnosis of depression (in
this case, manic-depressive disease) requires one primary and six secondary
symptoms.19 The DSM requires a total of five symptoms. Is this because if five
is good enough for a Supreme Court ruling it’s good enough for a diagnosis?
“In clinical practice,” note Allan Horwitz and Jerome Wakefield, “specifying
an objective cutoff point is convenient in order to generate diagnoses, decide
on treatments, and receive reimbursements. But there is no compelling sci-
entific reason for why that point for MDD [Major Depressive Disorder] is
set at five.”20 In a study reported in 1999, according to a simple DSM-based
questionnaire that random patients in primary care administered to them-
selves and that was scored by computer (the doctor spending two minutes or
less on the procedure in 85 percent of the cases), 28 percent qualified for a
mental disorder.21 Thus does the DSM generate diagnoses.
While depressed mood and anhedonia serve as gating criteria of Major
Depression, the fact is that episodes are so common in the general popula-
tion that as many as 50 percent of patients may confirm suffering from one
of the two if asked.22 The cardinal criteria therefore need to be buttressed
with secondary symptoms—also common in the community, however. As
we know, according to the DSM, such generic symptoms as fatigue and
174 THE NOCEBO EFFECT

insomnia carry the same diagnostic weight as a suicide attempt (more


weight, if a patient has both). Recall the case of a Mr. P, who during a rou-
tine medical visit reports fatigue, mild to moderate headaches, and feeling
frazzled. As it turns out, Mr. P. qualifies for the same diagnosis of Major
Depression as the following patient:

Mr. Jones is a fifty-one-year-old divorced white male with the chief com-
plaint “I don’t want to live anymore.” He presented in the ER last night with
intense suicidal ideation. He described feelings of hopelessness and guilt
and reported a weight loss of ten pounds in the last three weeks. He reports
extremely poor sleep with early morning awakening.23

Criteria designed to generate diagnoses yield the same diagnosis when the
patient is frazzled as when he is intensely suicidal. The upshot of this kind
of inflation is that a tenth of the American population now take antide-
pressants for a condition the builder of DSM-IV concedes is “not really
‘major,’ is not really ‘depressive,’ and is not really a ‘disorder.’”24 Evidently
the thought of exempting millions from psychiatric diagnosis seemed to
successive authors of the DSM like a flaw in their system.
The use of symptom checklists for diagnostic purposes was the hall-
mark of DSM-III, which, as noted, repudiates the Freudian or quasi-
Freudian model of neurosis as insufficiently scientific and installs in its
place a system capable of bringing different clinical observers to reliably
similar conclusions. Yet DSM-III rejects more than DSM-II. As Horwitz
and Wakefield establish in The Loss of Sadness, its simplistic criteria for
depression zero out the entire Western tradition defining melancholy as
uncaused, inordinate, or habitual sadness. In a profound dissent from the
view that the past has nothing to teach the present, Horwitz and Wakefield
consider the traditional understanding of melancholy a repository of wis-
dom and expose the costs of discarding the concept of normal sadness—
written into the tradition from its beginning in antiquity—in the name of
theoretically scientific diagnosis.
Under the DSM system, if someone shows enough presumptive signs
of depression, then that person is depressed and becomes a candidate for
medical management, no matter whether the sadness (if present at all)
arose from the breakdown of a marriage, the loss of a job, the failure of
an endeavor, transient distress, or no identifiable cause. Without bundling
the sadness incident to human life—in Hamlet’s words, “the heartache . . .
that flesh is heir to”—with the pathology of depression, it would be difficult
to discover depression at the epidemic level it has attained. Significantly,
the designer of the DSM-III diagnostic system grants the validity of the
Horwitz–Wakefield criticism of its context-free criteria, particularly in
THE FOLLY OF SYSTEMS 175

the case of depression.25 DSM-V adds language to the Criteria for Major
Depressive Disorder that reluctantly accommodates their argument that
what is called depression may be a warranted response to life itself—
reluctantly, because while the qualifying symptoms “may be . . . considered
appropriate” to a crisis, “the presence of a major depressive episode in addi-
tion to the normal response to a significant loss should also be carefully
considered.” Normality is under suspicion.

“Proteus Himself Is Not So Diverse”

Among the voices of tradition cited by Horwitz and Wakefield is Shake-


speare’s near-contemporary Robert Burton, author of the classic Anatomy
of Melancholy, precedent of their own discussion of “The Anatomy of Nor-
mal Sadness” in The Loss of Sadness. Burton indeed distinguishes ordinary
sadness, which by its nature passes, from the habitual, entrenched, disor-
dered sadness that becomes a scourge to the sufferer. “Even as ‘one distil-
lation [that is, secretion], not yet grown to custom, makes a cough, but
continual and inveterate causeth a consumption of the lungs’; so do these
our melancholy provocations . . . This melancholy of which we treat is a
habit . . . a chronic or continuate disease, a settled humour [mood] . . . not
errant, but fixed; and as it was long increasing, so now being . . . grown to
a habit, it will hardly be removed.”26 Melancholy is more than a sadness
occasioned by events and therefore likely to wane as events change; it’s an
unremitting sadness that preys from within.27 To this extent, then, Burton
concurs with tradition in depicting melancholy as a kind of self-caused
grief. Just as we could not but mourn if we were to learn that a close friend
had died, and could not but tremble if perched precariously on a cliff, “so
have melancholy men an inward cause, a perpetual fume and darkness,
causing fear, grief, suspicion, which they carry with them, an object which
cannot be removed, but sticks as close, and is as inseparable, as a shadow
to a body, and who can expel or overrun his shadow?”28 But while Burton
supports, to this degree, the distinction between circumstantial and non-
circumstantial sadness on which the argument of The Loss of Sadness rests,
what remains with the reader of the Anatomy of Melancholy is a sense of
the chaotic immensity of the subject, not a stable distinction governing it.
Indeed, an anatomy as Burton employs the term is practically an inver-
sion of the more familiar sense invoked by Horwitz and Wakefield—that
of an abstract analysis or methodical breakdown. An anatomy in Burton’s
sense, the sense that passed to Melville when he dissected the Leviathan in
Moby-Dick, may be methodical, but methodical to the point to chaos. If
Horwitz and Wakefield had looked a little more deeply into The Anatomy
of Melancholy, they would have found it calling into question not only the
176 THE NOCEBO EFFECT

fusion of transient and habitual sadness as in DSM, but the very principle
of codifying or systematically specifying mental disorders. How fitting that
the great figure of melancholy in Shakespeare is a character of the most
bewildering indeterminacy and many-sidedness: Hamlet, whose complex-
ity is such that we can’t really say where his simulation of madness ends and
something like actual madness begins.
Though the Anatomy of Melancholy looks into the causes, divisions,
manifestations, and cures of melancholy—the most indeterminate of
human afflictions—it’s less a systematic treatise than a flowing or overflow-
ing meditation on an illimitable subject. Burton in fact denies the possibil-
ity of pinning down an ill as variable as melancholy:

Who can sufficiently speak of these symptoms, or prescribe rules to compre-


hend them? . . . The four-and-twenty letters make no more variety of words
in divers languages than melancholy conceits produce diversity of symptoms
in several persons. They are irregular, obscure, various, so infinite, Proteus
himself is not so diverse; you may as well make the moon a new coat as a true
character of a melancholy man; as soon find the motion of a bird in the air as
the heart of man, a melancholy man.29

A methodical inquiry that undermines the possibility of method, the Anat-


omy is replete with catalogues, repetitions, digressions, embellishments,
and no doubt inconsistencies. The topic of melancholy seems to compre-
hend all things, and so caught up in this immensity is the Anatomy that the
diagrams serving as tables of contents for each of its three books bewilder
the reader like typographical labyrinths. Much as melancholy has no cause
but nevertheless, according to Burton, may have a thousand causes, so the
Anatomy brings out the indivisibility of melancholy even in the act of anal-
ysis. Thus, according to a commentator on the Anatomy,

Fear and sorrow, the principal ingredients, are symptoms (the ‘inseparable
companions’ of most melancholy) and causes (in the case of sudden frights
or bereavements); jealousy, too, is both a symptom and a cause . . . in fact,
all the passions of the mind can be seen in this way. The outline is simply
inadequate to the material . . . Burton states simply that his categories are a
convenience, not part of the nature of things, and even at times ludicrously
misleading.30

While DSM presents itself as a highly methodical document, we note


that depression (in the form of “depressed mood most of the day”) is a
symptom as well as the name of the disorder underlying the symptom, by
analogy with Burton. How is it possible for a disorder to be one of its own
symptoms? A few decades ago an interesting study was done of the folk
THE FOLLY OF SYSTEMS 177

disorder “Hyper-Tension,” an intuitive misunderstanding of what biomed-


icine knows as hypertension. Unlike the latter, Hyper-Tension has manifest
causes and symptoms, but despite its cause-and-effect structure it’s really
a tangled, nonlinear construct, with many ambiguities and doublings.
“Nerves” or “nervousness” figure all at once as a contributing cause, leading
feature, and principal outcome of the suppositious disorder.31 (The ficti-
tious Mr. P. seems to be describing something very like this folk syndrome,
with “frazzled” a good term for “nervous.” Both fatigue and headaches are
prominent symptoms of Hyper-Tension, while the new economy that has
left Mr. P. on edge supplies the acute stress thought to be one of its trig-
gers.) The listing of depressed mood as a symptom of depression presents
the same sort of tangle—a confusion at odds with the appearance of scien-
tific precision and clarity. Among the symptoms strongly associated with
depression in a paper that prefigures the diagnostic criteria of the DSM
aren’t only insomnia, fatigue, and poor appetite but constipation, urinary
urges, “over-talkativeness,” and “untidiness.”32 Who can sufficiently speak
of these symptoms?
In contrast to a scheme that organizes its subject with elegant clarity
(for example, the classification of mental diseases by Emil Kraepelin, the
pioneer of scientific psychiatry), Burton’s baroque classification of the ways
and means of melancholy looks like a pathless forest. Anyone consulting
it as a medical manual would very soon be lost in confusion. Burton was
entirely innocent of the emphasis on method that was chartered by Des-
cartes within a few years of the Anatomy of Melancholy and still shows up
in the Methods section of medical papers, though his unfettered approach
to melancholy is arguably not a weakness but a strength, freeing him from
presuppositions and enabling him to follow his subject in all of its wind-
ings. Burton’s message to a thinker about the DSM concerns not so much
the distinction between normal and abnormal sadness (which is apt to be
lost in the Anatomy’s overlapping waves of meditation) as the uncertainty
of even such fundamental units as symptoms—the supposed bedrock of the
DSM—and the artificiality of the system itself. After all, because depression
requires five of nine qualifying symptoms, two patients sharing exactly one
symptom can both be diagnosed as depressed,33 as can patients who appear
opposites to the naked eye—one showing psychomotor retardation, hyper-
somnia, and weight gain, the other agitation, sleep loss, and weight loss.34
The feature of the DSM system Burton would like most is the wild-card
category, Not Otherwise Specified, extensively used to capture cases that
otherwise fall outside the diagnostic scheme, although as it happens, NOS
is repudiated in DSM-V.
A seventeenth-century reader of The Anatomy of Melancholy trans-
ported to our time would be struck less by neglect of the distinction
178 THE NOCEBO EFFECT

between normal and abnormal woe in the DSM than by the shrinkage of
melancholy to a few items—the reduction of an “infinite” phenomenon to a
handful of markers, an “irregular” one to the logic of a checklist. The DSM
not only wrestles with Proteus but straightjackets him, though this isn’t
to say it has banished the sort of instability that Burton discovers in mel-
ancholy. For the DSM itself has changed shape. Indeed, it has become an
illustration of mutability. Not only has it jettisoned the Freudian assump-
tions of editions one and two (1952 and 1968, respectively), it has swelled
to some nine hundred pages—including apparatus—as if the immensity it
sought to master couldn’t be repressed after all. DSM-I contained 106 diag-
noses, DSM-II 182, the revolutionary third edition (1980) 265, DSM-IV
297, the 2000 revision of DSM-IV no less than 365,35 and the newest DSM
somewhere over 500, with many disorders subdivided into mild, moder-
ate, and severe variants, and the table of contents alone running 27 pages.
It’s as if the DSM made up for the absence of tests of mental disorder with
an abundance of text. With such a rain forest of available pathologies, who
doesn’t qualify for one or another authorized disorder? How many par-
ents are exempt from Parent-Child Relational Problem (V61.20)? If you
have a dispute with your landlord, DSM-V has a code for you: V60.89.
So encompassing is the DSM system that it has a diagnosis for the mag-
nification of ordinary ills into medical problems promoted by some of its
own categories. The diagnosis is Somatic Symptom Disorder—if not Illness
Anxiety Disorder, which for some reason isn’t classified among the Anxiety
Disorders.
A showcase of clinical fashion, of new coats, the DSM has introduced
such celebrated diagnoses as chronic fatigue syndrome and social phobia.
From DSM-II to DSM-III, Hyperkinetic Reaction of Childhood became
Attention Deficit Disorder, which was subdivided into three branches—
inattentiveness, impulsivity, and overactivity—which in the next revision
of the DSM reunited in a single disorder (ADHD) for which a child needed
to show eight of fourteen possible symptoms. In DSM-V inattention and
impulsivity (the latter now assimilated with hyperactivity) have their own
symptom lists, each requiring six matches. As to social anxiety, it may never
have occurred to the sufferer that dislike of public bathrooms and dislike
of being criticized are components of a single pathology. While many of
the changes introduced into the DSM by fashion and scholastic ingenuity
are impossible to take seriously, the shifting shape of the manual over the
decades does suggest that Burton, in emphasizing the uncertainty of men-
tal disorders, was on to something.
Indeed, the chair of the DSM-IV Task Force uses language reminiscent
of Burton to bring out the indeterminacy of mental disorders. “‘Mental
disorder’ and ‘normality’ are both extremely protean concepts—each so
THE FOLLY OF SYSTEMS 179

amorphous, heterogeneous, and changeable in shape that we can never


establish fixed boundaries between them.” In the attempt to order all this
uncertainty, the DSM has created “a hodgepodge .  .  . Some mental dis-
orders describe short-term states, other life-long personality; some reflect
inner misery, others bad behavior; some represent problems rarely or
never seen in normals, others are just slight accentuations of the every-
day.”36 Perhaps what’s most wrong with the DSM system is its aspiration
to be a system. Paradoxically, DSM-V is aware of its own artificiality, the
authors conceding that

a too-rigid categorical system does not capture clinical experience or impor-


tant scientific observations . . . The boundaries between many disorder ‘cat-
egories’ are more fluid over the life course than DSM-IV recognized, and
many symptoms assigned to a single disorder may occur, at varying levels
of severity, in many other disorders. These findings mean that DSM, like
other medical disease classifications, should accommodate ways to intro-
duce dimensional approaches to mental disorders, including dimensions
that cut across categories.37

The result is an even more elaborate system that incorporates mild versions
of many putative disorders, thus claiming still more of the territory of nor-
mality for medical purposes.

Method and System

In that DSM disorders are sometimes incorporated into other diagnoses,


they can serve to build ambiguity into a conceptual structure. In the spirit
of the protean, psychogenic non-epileptic seizures (PNES) are “almost
infinitely heterogeneous,” differing greatly from patient to patient,38 and
among the factors thought to underlie such seizures, in addition to malin-
gering and somatization disorder (for which the DSM once required exactly
13 or more out of 35 symptoms), are depression and PTSD.39 Even though
DSM criteria for PTSD mutate while those for Major Depression remain
the same, and even though PTSD contradicts the etiological agnosticism of
the DSM in that it springs directly from a specified cause, it overlaps Major
Depression and like that disorder has seen a breathtaking rise in preva-
lence. It is far from the case that two independent, methodically delineated
disorders, each valid and each distinct from normality, contribute or may
contribute to PNES.
The issue of overlap extends to treatment, in that SSRIs—preferred drugs
of the DSM era—are used to treat a rainbow of conditions from depression
to anxiety disorders, from hot flashes to PTSD, from obsessive-compulsive
180 THE NOCEBO EFFECT

disorder to bulimia.40 Many of these maladies seem to have caught the


public imagination, like the drugs themselves. That SSRIs are prescribed
for so many DSM constructs—conditions which enjoy both popular and
medical currency—suggests that the specificity of the conditions is exag-
gerated and that the drugs have something in common with panaceas of
old.41 (“Whatever the diagnosis . . . Librium,” read an ad in the 1960s.42
Tranquilizers like Librium were the antidepressants of their day, and it
happens that if a study subject is given diazepam surreptitiously, it proves
“completely ineffective,”43 meaning it’s in fact a placebo.) It appears that
when antidepressants are prescribed by nonpsychiatrists, there is often no
psychiatric diagnosis at all, the drugs being used in the manner of elixirs
to treat smoking problems, nonspecific pain, premenstrual tension, etc.44
Indeed, consumers have used ordinary NSAIDs for problems very similar
to those now considered as symptoms of clinical depression, problems like
“nerves,” sleep disturbances, and low mood.45 With common ills defined
as clinical issues in an era of medicalization, SSRIs come to be seen as
the appropriate therapy for problems that not long ago might have been
treated with aspirin.
The use of the same family of allegedly “selective” drugs to treat so many
disorders painstakingly distinguished from one another in the DSM sys-
tem speaks eloquently to the factitiousness of the system itself. That many
patients have multiple disorders and many are “at the boundaries of the
diagnosis”46 suggests the same thing. And because we’re caught in this
diagnostic system whose way of correcting itself is to expand, reflections
on the mind’s disturbances by authors who were not under the impera-
tive of system can be especially illuminating. By contrast with a purported
system of mental disorders, Burton’s Anatomy isn’t intended to enumerate,
delimit, or specify the exact symptoms of melancholy, and so the treatise’s
vagaries don’t read like faults of method. And Burton’s sense that melan-
choly can’t be pinned down to fixed symptoms is all the more suggestive in
that, like the distinction between transient and habitual melancholy, it’s not
his alone. It belongs to his work as an anatomist, that is, one who searches
the complexity of a thing in its entirety.
Erasmus in the brilliant and paradoxical Praise of Folly (ca. 1510) anato-
mizes that inexhaustible topic, in the process affirming an equivalent of
the principle that “you may as well make the moon a new coat”—which
is, indeed, an exemplary act of folly—as delineate the true character of a
melancholy man. Toward the beginning of her oration Lady Folly warns,

Don’t let anyone expect that, like the common lot of speech-makers, I’m
going to begin with a definition and then go on to divide up my topic—
that least of all. Either procedure would be inappropriate; circumscribing a
THE FOLLY OF SYSTEMS 181

power whose genius extends everywhere is as absurd as dividing up a force


in whose service all the orders of being agree together.47

As with melancholy, of which it serves as a kind of reverse image, the


shapes of folly are illimitable. Many, many are the ways in which humanity
contrives to delude itself and lighten the burden of its existence. Just as the
encompassing nature of melancholy makes it possible to view human life
under its aspect, so the universality of folly makes it possible to present
human life as a pageant of folly. “In his first chapter Ecclesiastes wrote, ‘The
number of fools is infinite.’”48 What could be farther from the enumera-
tion of diagnostic criteria than Erasmus’s portrayal of the universality and
mixed blessings of folly?
The most literally anatomical anatomy in our tradition would be Moby-
Dick, which is written in a kind of neo-Burtonian dialect and includes a
commentary on the system-confounding variety of whales. One might
have thought that owing to the solidity of whales, sorting them would be
a lot easier than distinguishing causes from symptoms of melancholy or
establishing the divisions of folly, but this isn’t so.

It is in vain to attempt a clear classification of the Leviathan, founded upon


either his baleen, or hump, or fin, or teeth; notwithstanding that those
marked parts or features very obviously seem better adapted to afford the
basis for a regular system of Cetology than any other detached bodily dis-
tinctions, which the whale, in his kinds, presents . . . The sperm whale and
the humpbacked whale, each has a hump; but there the similitude ceases.
Then, this same humpbacked whale and the Greenland whale, each of these
has baleen; but there again the similitude ceases. And it is just the same with
the other parts above mentioned. In various sorts of whales, they form such
irregular combinations; or, in the case of any one of them detached, such an
irregular isolation; as utterly to defy all general methodization formed upon
such a basis. On this rock every one of the whale-naturalists has split. 49

There’s no checklist of symptoms for being a whale. Even the colloquial def-
inition of a whale as “a spouting fish with a horizontal tail,” which has the
virtues of clarity and common usage, leaves out the matter of magnitude
(and misclassifies a mammal). Who shall prescribe rules to Leviathan?
Melville’s brilliant catalogue of whales as so many species of books, with
sperm whales as folios, mocks the principle of an authoritative summa-
tion or ordering—a bible—of knowledge. It’s offered in a spirit of the serio-
comic and stands as a monument to incompletion, with Melville writing
at its end, “I now leave my cetological System standing thus unfinished,
even as the great Cathedral of Cologne was left, with the crane still stand-
ing upon the top of the uncompleted tower.”50 We won’t find system in a
182 THE NOCEBO EFFECT

work as miscellaneous and multilingual as Moby-Dick, one whose ambi-


tion it is “to fuse poetry and prose, epic and tragedy and novel . . . colloquial
and biblical, Shakespearian and Miltonic, with the ambling language of a
learned encyclopedist thrown in for good measure.”51
One wonders how Melville would view the effort to construct a work-
ing system of something as elusive and equivocal as mental disorders. The
first sentences of Moby-Dick speak of melancholy not in some denatured
clinical idiom but in something like the spirit of the learned encyclopedist,
Burton.

Call me Ishmael. Some years ago—never mind how long precisely—having


little or no money in my purse, and nothing particular to interest me on
shore, I thought I would sail about a little and see the watery part of the
world. It is a way I have of driving off the spleen, and regulating the circula-
tion. Whenever I find myself growing grim about the mouth; whenever it is
a damp, drizzly November in my soul; whenever I find myself involuntarily
pausing before coffin warehouses, and bringing up the rear of every funeral
I meet; and especially when my hypos get such an upper hand of me, that it
requires a strong moral principle to prevent me from deliberately stepping
into the street, and methodically knocking people’s hats off—then, I account
it high time to get to sea as soon as I can.52

Spleen, hypochondria, thoughts of death, a November of the soul: Here is


what we now call depression. Ishmael’s remedy of going to sea as a com-
mon sailor is not medical but, in effect, practical. And much as the vary-
ing names and shifting images or symptoms of melancholy (along with
the suggestion that it has something or other to do with circulation) recall
Burton, so the common-sense expedient of changing scenes agrees with
the Burtonian maxim, “no better physic for a melancholy man than change
of air and variety of places.”53 If you’re melancholy, try travel; maybe your
affliction is itself transient, in contrast to the habitual sadness whose
sources lie deep within, and which serves as its own cause. The narrative of
Moby-Dick exists because Ishmael suffered from a transient, normal sad-
ness and took a practical measure, independent of medical or theoretical
systems, to escape it.

Mockery of Medicine

The sense of irreducible multiplicity that animates our anatomical sur-


veys of melancholy, folly, and whales reflects the ridicule of intellectual
systems running through the satiric tradition. In part this ridicule com-
ments on the poverty of schematic constructs and the vanity of theoretical
or academic knowledge, or pretense of knowledge, as against the richness of
THE FOLLY OF SYSTEMS 183

experienced reality. Maybe only a satirist could do justice to the story of a


patient with a successful career who consults a psychiatrist because a quiz
on the Internet convinced him that he met the criteria for a newly popular
syndrome—Asperger’s.54
For the purposes of this commentary on the APA’s bible of diagnosis,
it’s significant that doctors proud of their learning and addicted to abstract
systems have long been among the targets of satire. From Chaucer to Eras-
mus, from Montaigne to Swift to Tolstoy, doctors are portrayed as pre-
tenders to a knowledge that may be socially impressive but has little to
do with reality.55 One thinks of Chaucer’s Physician, who talks Galen and
Avicenna and grows rich in a time of plague. Like a psychiatry based on “a
common nomenclature—but probably the wrong one,” medicine as satire
sees it is supported by a guild language, as if doctors had a manual that
allowed them to speak imposingly even if they can’t actually do anything
for patients except channel the placebo effect or else harm them. Bearing
in mind that physicians were honored through the centuries all the same,
satire may well represent the best thinking about medicine that tradition
attained. Today we are reminded that if a patient coincidentally improves
while taking a placebo, he or she is likely to attribute the improvement to
the placebo.56 In the words of the physician Rabelais, Happy the physician
called in when the illness wanes: a proverb he interprets straightforwardly to
mean, “The illness had spontaneously passed its crisis; even if a physician
never arrived on the scene it was drawing to its end.”57
Some argue that a lack of culturally enshrined images of doctors as
greedy pretenders has left the United States exposed to aggressive medi-
cine.58 At its richest, however, satire goes beyond caricature. The insights
of the satiric tradition into the false attractions of medicine and system
itself, and of the connections between them, haven’t yet been assimilated;
if they had been, we wouldn’t need to be reminded by a prominent critic
of DSM-V that “real life is always so much more complicated than what is
written down on paper.”59 Consistent, too, with satire’s skepticism toward
professional mysteries are the findings that recovery from a disorder like
depression isn’t necessarily related to the treatment received and that many
patients value their relationship with doctors regardless of the technicalities
of treatment.60
Deriving as it does from the Latin for “full” and related to the word “sat-
urate,” satire has a built-in bias against the thinness of theory and abstract
knowledge and in favor of the disorderliness of reality.61 Hence, for exam-
ple, the tradition’s affection for overflowing catalogues and other modes
of excess, as well as farrago-like compositions. “Here is God’s plenty,”
said Dryden of the Canterbury Tales (an incomplete, chaotic work with
no single definitive text). Joyce’s Ulysses refers to itself as an “allincluding
184 THE NOCEBO EFFECT

most farraginous chronicle,”62 a label that applies to Moby-Dick as well—


which isn’t to say some single thread runs through the entirety of the satiric
tradition. As the membership of such radically different spirits as Joyce
and Tolstoy in a common tradition may suggest, satire is no single thing
or genre but accommodates all kinds of world-enlarging originality. Still
among the richest discussions of the subject is Northrop Frye’s analysis of
satire’s disparagement of system-building as against the multiplicity of the
experienced world.

Satire may often represent the collision between a selection of standards


from experience and the feeling that experience is bigger than any set of
beliefs about it. The satirist demonstrates the infinite variety of what men do
by showing the futility, not only of saying what they ought to do, but even of
attempting to systematize or formulate a coherent scheme of what they do.63

Just so do Erasmus and Rabelais ridicule scholasticism, Swift academic


philosophy, and Tolstoy the fabrications of historians who “reprocess the
messiness of reality by eliminating loose ends and unactualized possibili-
ties.”64 As noted by a scholar of Montaigne, “The terms system, systematic,
systematize do not apply to Montaigne, because he believes that the variet-
ies of human experience refute all systems.”65 The Bakhtin who denied that
the world can be described with a set of rules66 wrote his doctoral thesis
on Rabelais, mined the tradition of satire, and envisioned the novel as a
uniquely open form: the literary analogue of the Cologne Cathedral. In
The Brothers Karamazov—the last and greatest work by Bakhtin’s favor-
ite novelist—satire expresses itself not only in motifs and topics as old as
Lucian, but in the ridicule of doctors, the portrayal of many disorders baf-
fling to medicine, and the rejection of closure and accentuation of surprise.
From a satiric point of view, the continual revision of DSM merely dra-
matizes the futility of system-building, all the more when the process is
steeped in conflict and contradiction. The chair of the DSM-IV Task Force,
now the arch-critic of DSM-V, concedes that he did nothing to curtail the
strong potential for diagnostic inflation built into the document he inher-
ited but maintains he was taken off-guard when the drug companies began
exploiting it three years later, when DTC advertising went into effect.
Reading about meetings where experts debate disorders with no sense that
their words might actually have public consequences, we are reminded of
proceedings of a Swiftian academy.
But where does this leave us? Is the protean variety of human mala-
dies such that they simply mock medicine? Montaigne thought so. A sort
of satirist who portrayed his own infinite variety and repeatedly revised
his essays not to repair faults in their system but because he didn’t believe
THE FOLLY OF SYSTEMS 185

in system, Montaigne was convinced that medicine as then practiced was


wasted effort at best, torment at worst, because nature “keeps her processes
absolutely unknown.”67 A similar but harder, more polemical belief in the
secrecy of causes led Tolstoy to full-fledged medical nihilism. “In Tolstoy’s
scheme, disease, like battle, is unknowable and unrepeatable; therefore, no
course of treatment can possibly work .  .  . Every unhealthy organism is
unhealthy in its own way.”68 Doctors in War and Peace, Anna Karenina, and
The Death of Ivan Ilych put on shows of knowledge to cover a complete lack
of knowledge. But with the conclusion that treatment is impossible in the
nature of things, satire itself clashes with experience and becomes dogma.
A less corrosive version of the Tolstoyan position holds that “a disease
always occurs in a particular person and will be different depending upon
many things about that person”69—a formulation that respects individual
differences without denying the very possibility of medical treatment.
Despite or because of his dogmatism about medicine,70 Tolstoy offers a
compelling study of the conflict between individual suffering and medical
categories in the somewhat satiric account in War and Peace of Natasha’s
illness and recovery following a catastrophic romance with a scoundrel she
didn’t know to be married. Upon learning the truth Natasha attempts sui-
cide, albeit ambiguously, then a condition Tolstoy names “grief ” sets in,
marked by such symptoms as loss of appetite, loss of sleep, and low spir-
its, each of which appears among the DSM criteria for depression. Yet it
appears Natasha exhibits signs of consumption (tuberculosis), in confor-
mity with the nineteenth-century theory that this disease could have moral
causes and that envisioned it as the successor of melancholy in the antique
medical traditions at work in the pages of Burton.71 At once unknowable
and yet recognizable, serious and yet cured by the passage of time, Nata-
sha’s ambiguous condition lies somewhere on the continuum between
ancient melancholy and postmodern depression, bears some affinity to a
disease thought to have either physical or spiritual causes, and is so subtle
in its ambiguity that a certain doctor seems like a fool and a pretender in
its presence even though he grasps that “the malady was chiefly mental.”
But how is it that Natasha decided to run off in the first place with a
rake who happened to be married, while she herself was engaged? Because
Kuragin convincingly acts the part of the lover, Natasha convinces herself
that she too is in love, and because love conventionally calls for a loss of will
(we “fall” in love), she manages to feel helpless to resist his plan to “steal her
away and carry her off to the ends of the earth.” “I told you, I have no will,”
she tells her confidante, Sonya. “Why can’t you understand? I love him.”72
It’s as if Natasha contracted, or thought she contracted, a disease called
love, which is reputed to have certain symptoms, and therefore persuaded
herself that she too had just those symptoms, including most significantly
186 THE NOCEBO EFFECT

a loss of the power to resist or even think. How conventional is Natasha’s


powerlessness? Francesca in the Inferno claims she was rendered power-
less by love—“Love, which absolves no loved one from loving, seized me
so strongly with delight in [Paolo], that, as you see, it does not leave me
even now.” And this love in turn is patterned on the literary romance that
brought her and Paolo together.

Amorphous Distress

In addition to the philosophical and logical problems of symptom-counting,


there’s the practical issue that people being screened for mental disorders “for
no good reason that we know, sometimes change their stories between inter-
views,”73 thereby upsetting the data base. Perhaps they change stories because
their symptoms don’t take the form of distinct and specific entities, or because
there’s no single way to tell their story or any story (War and Peace itself is only
“one of many possible stories”),74 or because they aren’t really being asked to
tell a story at all but to give Yes or No answers to standard questions.
The principle that our maladies may be too protean for diagnostic
schemes and checklists applies particularly suggestively to a number of
ambiguous conditions that, like Natasha’s, may or may not be properly
medical entities at all but constitute an active border region because of
their uncertainty. Many allergies may represent the sort of distortion of
somatic signals that is both an effect and a cause of distress.75 It’s a com-
ment on the conventions of diagnosis that a number of controversial syn-
dromes present overlapping symptoms and could be diagnosed differently,
depending on the whim of the specialist. Not only do fibromyalgia and
IBS overlap, so do fibromyalgia and chronic fatigue syndrome—and given
that impaired concentration, sleep problems, and fatigue itself count as
symptoms of CFS, that illness for its part shares territory with depression.
So blurry are the boundaries of such disorders that “even distinguishing
symptoms were experienced so frequently by all comparison groups as to
render them nondiagnostic.”76 “Unfortunately, patients don’t fit into cat-
egories as well as we would like them to,” concedes Spitzer.77
Just as our favored systems and grids may be inadequate to a reality that
is “irregular, obscure, various,” labels like “depression,” along with those for
various somatic syndromes, may represent little more than ways of packag-
ing or branding the experience of being unwell. Such labels are an available
alphabet in which an indeterminate distress can be cast to make sense in and
to the world around us. Just this argument has been made by Allan Horwitz:

Cultures provide publicly available and shared meanings that facilitate cer-
tain kinds of symptom interpretations while discouraging others . . . Naming
THE FOLLY OF SYSTEMS 187

a disorder provides a coherent frame that organizes experiences in ways


that a specific culture recognizes. The application of a particular illness cat-
egory, whether posttraumatic stress disorder, panic disorder, social phobia,
or depression, shapes diffuse symptoms into structured and meaningful
entities.78

Cultures order the expression of distress79—though once distress acquires


a clinical definition and a kind of instantly recognizable identity, it can
become more definite in its own right through the operation of the nocebo
effect. Additionally, just as diagnostic labels enable the presentation of
distress in a way recognized by the surrounding culture, syndromes that
happen to be resistant to treatment, like a number of mystery disorders
that have shadowed the ascendancy of the DSM, enable patients to present
distress in a way that challenges or even confounds understanding, pre-
cisely because their protean symptoms and self-reinforcing dynamics may
or may not make medical sense. (See next chapter.)
If a disorder is “meaningful” or merely fashionable enough, its treat-
ment can seem to justify considerable side effects, in some cases effects that
might be taken for a disorder of their own. As argued above, only because
of conventions of the marketplace are drugs that disorder sleep and depress
sexual interest said to be antidepressants. By one measure, over 20 per-
cent of Paxil users report somnolence and over 20 percent of Prozac users
insomnia, both rates exceeding placebo.80 As for sexual problems includ-
ing diminished libido,

antidepressant treatment is associated with the worsening of pre-existing


sexual dysfunction, and with the development of new sexual difficulties in
previously untroubled patients. Incidence estimates vary widely, depending
on the methodology used, but in excess of 45% of patients with depression
may experience “treatment-emergent sexual dysfunction” associated with
antidepressant drugs.81

Another favorite target of satire is fashion, and only because of diagnos-


tic fashion is depression found to be at once highly prevalent and serious
enough to warrant a treatment that dulls the patient. If diagnostic practices
vary from culture to culture, they also vary from one era to another in the
same culture as fashions wax and wane. A good theory for the decline of
hysteria in the first decades of the twentieth century holds that patients
who would formerly have been candidates for hysteria adapted to new
medical models and expressed their ailment in symptoms like fatigue that
seemed consistent with them.82 As for neurasthenia (which seemed con-
trary to hysteria to some medical observers but not to the neurologist who
identified it), it “disappeared almost as rapidly as it appeared,”83 at least in
188 THE NOCEBO EFFECT

the West. But we don’t have to look back a century to witness an overnight
shift of diagnostic practice. The Feighner criteria of 1972 made history by
codifying the diagnostic markers of some dozen disorders, the first few
on which the data were said to be in hand. In their euphoria the authors
concluded their paper by proclaiming it a “synthesis based on data rather
than opinion or tradition.”84 Yet among the disorders covered in the paper
was homosexuality, a diagnosis requiring only “persistent homosexual
experiences beyond age 18,” with two technical exclusions. No more than a
year separated the triumphalism of the Feighner criteria from the deletion
of homosexuality from the ranks of mental disorders by vote of the APA.
Looking back on this sequence of events, it’s impossible to credit the claim
that the inclusion of homosexuality on the Feighner list in the first place had
nothing to do with opinion or tradition.
So too, what might have been diagnosed as anxiety in the 1960s, when
antianxiety pills were all the rage, could well be classified as depression in the
era of depression.85 Indeed, a patient who carried over from the 1980s to the
1990s could have been diagnosed first with anxiety, then with depression,
for the same set of problems.86 Depression became a diagnosis of choice just
when the formerly booming market for antianxiety drugs ran into trouble.

Valium and Librium quite literally became household names .  .  . Valium


and the other benzodiazepines were marketed as tranquilizers for anxiety
from 1960 onward. In the 1980s, claims that they caused dependence led
to a backlash against the benzodiazepines, leaving the market open for a
new group of drugs which, however, could not be called tranquilizers as this
term was now too closely linked to dependence and withdrawal. The strategy
seemed clear to the major drug companies—to persuade doctors that behind
every case of anxiety lay a case of depression.87

Once this presumption was in place, it was just one more step to claim that
depression hid behind common somatic symptoms. So arose the popu-
larity of antidepressants, which from this point of view look like second-
generation antianxiety drugs. Side-by-side references to depression and
anxiety are in fact everywhere in the medical literature, a pairing sug-
gesting that the two disorders represent variant configurations of distress.
For perhaps half of the twentieth century mixed anxiety-depression was
the most common psychiatric illness in the United States, and the hybrid
remains common to this day.88 That both anxiety and depression have a
self-referential component, so that you can be anxious about being anxious
and depressed about being depressed, suggests that the two disorders have
more in common than their official specificity denotes.
The drugs used to treat social anxiety are in fact antidepressants and
advertised as such—Paxil being trumpeted to psychiatrists as “the anxiolytic
THE FOLLY OF SYSTEMS 189

antidepressant.” Ironically, almost absurdly, an antidepressant used to treat


anxiety can generate side effects that would read like signs of depression in a
depressed person, while an antidepressant used to treat depression can gen-
erate side effects that would look like anxiety in an anxious person—anxiety
itself, in fact, being reported by 10–15 percent of patients taking fluoxetine
(Prozac).89 As noted in a recent article by Spitzer and others, “Depression
and anxiety co-occur with one another up to 50% of the time . . . There is
little evidence that depression, anxiety and somatization are separated by
natural boundaries.”90 If such disorders aren’t specific entities distinguished
by natural boundaries, how is it that they are codified separately in DSM-III
and its successors, how is it that Major Depression has a symptom period of
two weeks and its anxiety cognate 26 weeks, and how is it that depression,
in particular, has spawned its own immense literature? To be informed by
the builder of the DSM diagnostic system that depression doesn’t exist in
nature is like being told not to think of a white horse.
As depression serves medicine as a diagnostic catch-all, so can it serve
patients as an umbrella term for diverse complaints. In David Lodge’s
Therapy (1995), a satire well tuned to the spirit of the age, the antihero
Tubby Passmore identifies himself by his ailments, first of all depression:
“I have depression, anxiety, panic attacks, night sweats, insomnia, but not
nightmares.” As if to show that his depression is a general malaise and not
a specific disorder, Tubby habitually refers to it in connection with other
complaints such as knee pain, back strain, male menopause, restlessness,
even bad posture. That there’s something synthetic about his depression is
suggested by his comment, “One of the depressing things about depression
is knowing that there are lots of people in the world with far more reason to
feel depressed than you have, and finding that, so far from making you snap
out of your depression, it only makes you despise yourself more and thus
feel more depressed.” That is, Tubby gets depressed about having too little to
be depressed about—levitates depression into existence. Satire has a sharp
eye for the follies of convention, and the ailment by which Tubby defines
himself is indeed more like a social convention than a legitimate disorder.91

A Hero in Distress

The satiric tradition ran strong in Dickens, his longest and most ambitious
novel, Little Dorrit (1857), exposing a society of pretenders through which
bankruptcy races with the speed and virulence of a “moral infection.”92
Dickens’s original conception called for a novel titled Nobody’s Fault, its
protagonist a man “who should bring about all the mischief in it, lay it all
on Providence, and say at every fresh calamity, ‘Well, it’s a mercy, however,
nobody was to blame you know!’” In the medical literature growing out of
190 THE NOCEBO EFFECT

the DSM it often seems no one’s to blame either; thus, in an open-placebo


ADHD study discussed above, no one’s to blame for overselling ADHD,
doctors aren’t to blame for overprescribing drugs to manage it, parents
aren’t to blame for their own inattention, and children aren’t responsible
for behavior problems caused by a neurological disorder. In Little Dorrit
as it exists the hero—not Amy Dorrit but Arthur Clennam, who actu-
ally refers to himself as Nobody—learns about agency and responsibility
over the course of difficult experience. Clennam carries into Little Dorrit
a weakness of agency as well as a sort of vulnerability that can take a form
resembling either depression or anxiety.
When we learn that Clennam “could not have felt more depressed and
cast away than if he had been in a wilderness,”93 we understand what’s meant
without reference to any clinical criteria, just as we give no thought to neu-
rotransmitters in his brain. A few pages later, he arrives at his lodging and

sat down before the dying fire, as he had stood at the window of his old room
looking out upon the blackened forest of chimneys, and turned his gaze back
upon the gloomy vista by which he had come to that stage in his existence.
So long, so bare, so blank.94

The same Arthur Clennam is also beset with anxiety. “I am in a very anx-
ious and uncertain state,” he says at one point; “a state that even leads me
to doubt whether anything now seeming to belong to me, may really be
mine,”95 because he may have inherited tainted money. A stranger to the
notion that depression and anxiety are specific conditions—each with its
theoretical cause, symptom set, and treatment—and not bound by the
artificial distinctions and illusory certainties of a clinical lexicon, Dickens
reveals in Clennam a nonspecific sense of lack appropriate to someone who
thinks of himself as Nobody. (Similarly, the guilt Clennam carries around
may or may not conform to the DSM standard of “excessive or inappropri-
ate guilt.”)96 All the more ironic, then, that Dickens’s fiction is now being
used in medical education, mainly, it seems, as an illustrated catalogue of
psychiatric conditions the author had the prescience to identify before they
were codified by medicine.97 Among the diagnoses said to be prefigured in
Dickens are multiple personality disorder, PTSD, and narcissistic person-
ality disorder, all coinages of the late twentieth century. Presumably, when
the next iteration of the DSM appears, Dickens will have predicted that too.
Dickens didn’t have his eye on the clinical discoveries or fashions of
later generations but on his own time and place, and Little Dorrit was writ-
ten under the inspiration of satire’s intense topicality. Within a few years of
its appearance the argument was made that regular medical examinations
are a necessity and physiological abnormalities must be dealt with in their
THE FOLLY OF SYSTEMS 191

earliest stage, two positions that in time became pillars of medicalization.


In his Lectures on the Germs and Vestiges of Disease, and on the Prevention
of the Invasion and Fatality of Disease by Periodical Examinations (1861),
the British doctor Horace Dobell contended that “abnormal physiological
states, recognizable under various forms of impaired health and attended
by a legion of anomalous symptoms, may be traced back to still earlier
periods in their history, when they require the greatest vigilance of the phy-
sician to detect any deviation from the standard of normal health.”98 This
in itself represents something like the first onset of the notion that cancer
must be eradicated in its infancy, lest it progress inevitably to fatality. The
imperative to eliminate “any deviations—subtle or glaring—from a clearly
demarcated ‘normal’”99 conflicts with the ambiguity of many of our ills and
attaches such hyperbolic importance to a narrow ideal of normality that it’s
bound to carry over from medicine to other domains. As if he were present
at the creation of this strained notion of the normal, Dickens populates his
fiction, including Little Dorrit, with characters or caricatures who flamboy-
antly defy it. As readers we delight in their satiric vividness and profusion.

Biomedical Entities vs. Sociocultural Expressions

Instead of the sort of system that hypertrophies and grows more inventively
specific with each iteration, Nortin Hadler classifies general distresses into
four main groups, the first consisting of:

Loss of the sense of well-being


Decreased energy
Easy fatigability
Heaviness/aching in the temples
Inexplicable anxiousness
Perception of a sleep debt
Vigilance as to unusual symptoms100

The theory seems to be that symptoms in this group open the way for those
in the others, such as gastrointestinal complaints. One of the merits of the
model is that it accounts for the sort of inflammation of common ills that
propels the process of medicalization. That vigilance as to unusual symp-
toms, which is itself a mode of distress, should heighten the perception of
other distresses points to the vicious dynamic that makes many syndromes
resistant to treatment. The same model allows us to speak of depression
without the baggage of its codified symptoms, thresholds, and qualifiers,
and without reference to a presumed cause. It also captures the kinship of
depression and anxiety.
192 THE NOCEBO EFFECT

The principle that conditions like depression aren’t specific biomedical


entities but variants of distress clashes with the ambition of distinguishing
disorders scientifically. The Horwitz model represents perhaps the most
cogent challenge to the hyper-specificity of the DSM, suggesting how it is (for
example) that generic symptoms formerly interpreted as signs of neurosis
became signs of depression under the auspices of the DSM system; “depres-
sion” configures the experience of distress in a way that speaks to our time,
that makes sense in the current marketplace. The same model furthermore
implies that pills to correct a chemical imbalance of the brain don’t go the
source of depression and reminds us that slogans like “chemical imbalance
of the brain” have their own social currency. And just as terms like “depres-
sion” or “melancholy” resonate in some times and places and not others,
so diagnostic frameworks may be comparatively stable in some times and
places and in others subject to intense lobbying and collective bargaining, as
with the DSM. So much transaction goes into the making of the DSM that it
has been said this authoritative document actually represents “a strange mix
of social values, political compromise, scientific evidence, and material for
insurance claim forms,”101 in other words, a farrago.
Three applications of the foregoing.

1. If, despite their names, diagnostic criteria, and other trappings of


specificity, some disorders can be thought of as ways of enacting distress,
by the same token a disorder unaccompanied by distress is probably not
a disorder at all. A study already cited found that while 38 percent of sur-
veyed women reported sexual dysfunction (reported in the sense of check-
ing a box on a form), few deemed it a problem.102 (Notes DSM-V about
Female Sexual Interest/Arousal Disorder: “When distress about sexual
functioning is required [to qualify for the diagnosis], prevalence estimates
are markedly lower.”) It would be presumptuous to argue that undistressed
women suffer from a disorder, and still more presumptuous to try to raise
their awareness of their plight.
2. Given that PTSD (one of Horwitz’s examples of a socially available
form of distress) was installed in DSM-III in 1980 in response to cam-
paigning by psychiatrists opposed to the Vietnam War,103 and given that
its validity as a disorder has been sharply questioned by the founder of the
DSM diagnostic system, it seems most improbable that the literature of
former centuries could have predicted an entity called PTSD. Significantly,
even a reader who interprets the Odyssey as an allegory of psychological
trauma concludes that the hero doesn’t actually show the symptoms of
PTSD.104 Set aside that the moral contradictions complicating the warrior’s
return to civilian life don’t apply to an ancient hero whose slaughter of the
suitors inside his own palace is aided by the goddess Athena. Set aside that
THE FOLLY OF SYSTEMS 193

Homer wasn’t an allegorist. (“Is it possible that Homer really wanted to say
all that people have made him say?” asks Montaigne.)105 The fact is, a psy-
chological disorder born in the year 1980 under particular circumstances
doesn’t represent a biomedical entity immune to historical fashions, like
smallpox.106 Members of the DSM-III Task Force themselves hesitated to
codify a diagnosis “tied specifically to a historical event,”107 that is, PTSD.
Nor did the historicity of PTSD stop there. In the next iteration of the
DSM, you qualified for PTSD if you were merely “confronted with” the
actual or threatened death of “others,” language so vague it included those
who watched the events of 9/11 on television. Once again, the line between
clinical disorder and normal distress was effaced.108 The PTSD diagnosis
has certainly allowed for inflated findings. It appears rear-end collisions
less violent than those of bumper-cars at amusement parks may lead to
“post-traumatic stress.”109 And a population tested positive for PTSD when
asked whether they were bothered by thoughts of the worst movie they had
seen in recent months—in fact, “51.7% of participants in the movie sample
scored higher than plane crash victims [in a PTSD study] two months after
the crash.”110
3. If many disorders represent ways of channeling distress into socially
recognized forms, then the DSM, by recognizing one new disorder after
another, has actually contributed to their occurrence—has fed the nocebo
effect. Once multiple personality disorder was installed in DSM-III as a
result of persistent lobbying, it came to be diagnosed much more often.111
Strong evidence suggests that MPD was an artifact of treatment by ther-
apists who believed in MPD. Ironically, the progenitor of the diagnostic
revolution in psychiatry thought the same of PTSD. Said Mandel Cohen in
an interview in 2000,

There’s another disorder DSM-III introduced that’s a billion dollar item:


post-traumatic disorder, Vietnam Syndrome. I gave a talk at the APA in
Canada in which I pointed out that I examined these patients and it seemed
to me that they had anxiety neurosis or depression and battle dreams. But
battle dreams are normal for a soldier. One of the best examples of this was
Shakespeare’s Harry Hotspur, a fierce warrior, who was having battle dreams
in bed, who jumped out of bed with them. His wife said cut it out—you’re
in bed with me, you’re not supposed to be doing this. And he said it doesn’t
mean a thing. Sailors dream about sailing, wine-pressers dream about mak-
ing wine and soldiers dream about fighting. That’s all there is to it. Battle
dreams have been there since the beginning of time. I think the cases we
were seeing were anxiety neurosis, but I feel it was doctors and social work-
ers who put the post-traumatic concept into the heads of these guys.112
8

The Malady of Awareness

The Socially Anxious Underground Man

As with the interpretation of Dickens as a seer who identified specific dis-


orders before they were known to science, it’s possible to find social anxiety
disorder dramatized in the literature of the past if only you’re committed to
finding it, selective in the handling of evidence, and indifferent to anach-
ronism. A candidate is Dostoevsky’s Underground Man, a soliloquist for
whom other people seem to be torture, and who confesses, “My whole life
I’ve somehow looked sideways and never been able to look people straight
in the eye.”1
A former clerk painfully conscious of his own insignificance and con-
sumed with spite even toward the reader, the nameless narrator of Notes
from the Underground exhibits a number of traits that, taken out of con-
text, read like social anxiety: “I did not associate with anyone, even avoided
talking, and retreated further and further into my corner. At work, at the
office, I even tried not to look at anyone . . . ‘I am alone, and they are every-
body,’ I thought.” “I was dreadfully afraid that I would somehow be seen,
or meet someone, or be recognized.” “I was afraid that everyone there [in a
tavern] . . . would fail to understand and would ridicule me when I started
protesting and talking to them in literary language.” At a rendezvous with
former school-fellows where he’s met with the contempt he dreads, our
hero suffers symptoms like the solitary diner in an ad for SAD, breaking
into a sweat over and over again, pierced by humiliation. The fear of stand-
ing exposed before others is both experienced and described with halluci-
natory vividness. According to DSM-V,

the essential feature of social anxiety is a marked, or intense, fear or anxiety


of social situations in which the individual may be scrutinized by others . . .
When exposed to such social situations, the individual fears that he or she
196 THE NOCEBO EFFECT

will be negatively evaluated. The individual is concerned that he or she will


be judged as anxious, weak, crazy, stupid, boring, intimidating, dirty, or
unlikable.

The Underground Man qualifies for many of these epithets, and knows it.
If diagnosis means subsuming a case under a clinical model, maybe he
qualifies for SAD as well.
As the authors of The Loss of Sadness argue, a diagnosis that looks at symp-
toms only, ignoring the story surrounding them, will interpret many mood
variations as depression that lie outside the jurisdiction of medicine. In the
case of the Underground Man, in order to arrive at a diagnosis of SAD you
have to ignore a good half of his story, for example his way of torturing oth-
ers because others are torture to him. Representing the Underground Man
as a sufferer from social anxiety not only makes him more of an innocent
than his story shows him to be, and not only tags him with a disorder that
was codified a century later and half a world away (and with controversy at
that), but attaches a clinical definition to one whose first concern seems to be
to resist all such attempts at summary or objectification. As M. M. Bakhtin
writes of a number of Dostoevsky’s heroes including the Underground Man,

They all do furious battle with .  .  . definitions of their personality in the


mouths of other people. They all acutely sense their own inner unfinalizabil-
ity [indeterminacy], their capacity to outgrow, as it were, from within and
to render untrue any externalizing and finalizing definition of them . . . We
have already noted how agonizingly the Underground Man eavesdrops on
all actual and potential words others say of him, and how he tries to outguess
and outwit all possible definitions of his personality others might utter.2

Precisely as an imposed definition of the Underground Man’s personality,


the diagnosis of SAD constitutes not just an interpretation at once one-
sided and anachronistic, but a direct violation of the author’s intent.
But if the Underground Man doesn’t suffer from SAD, then what’s his
problem?
As implied by Bakhtin’s account of his obsessive endeavor to outthink
the world around him, the Underground Man is a study in heightened
or inflamed consciousness, and, as seems only appropriate, he himself is
aware of this malady.

I swear to you, gentlemen, that to be too conscious is an illness, a genuine


full-blown illness. Normal human consciousness ought to be more than suf-
ficient for man’s everyday needs, that is, a half or a quarter less than that
portion which falls to the lot of an educated person of our unfortunate nine-
teenth century . . . I’ll wager you think that I’m writing all this out of bravado
THE MALADY OF AWARENESS 197

in order to make fun of men of action . . . but really, gentlemen, who can take
pride in his illnesses, still more boast about them?3

“I’ll wager you think”: Here then is our hero’s attempt to keep one step
ahead of everyone who has him figured out, as if the curse of heightened
consciousness rendered others shallow by comparison. Such consciousness
isn’t an incidental trait of the Underground Man but one that makes itself
felt through the entirety of his narration as he gives play to a noxious habit
of self-reference. Unforgettably, he likens himself to “an intensely aware
mouse.”4

Awareness, Happiness, Misery

In its professed rationality and transparency and its international reach, the
DSM diagnostic system introduced in 1980 adapted to psychiatry the basic
principles that steel-and-glass modernism brought to architecture decades
before. As suggested by Robert Spitzer’s comment that psychiatry was in
need of a new beginning when DSM-III was born, the diagnostic revolution
had a utopian strain, and the same is arguably true of architectural modern-
ism.5 Notes from the Underground was written in reply to a utopian novel
that spoke in its own way for new principles of construction, a novel that
proved immensely influential, feeding into the most world-transforming
utopian ideology of the twentieth century: Marxism–Leninism.
As sharp as his mockery of himself is, the Underground Man’s worst
taunts are reserved for those who would like to make the world a happy
and rational place by rebuilding it in the image of a Crystal Palace, the
immense hall of glass constructed with stunning speed and efficiency for
the Great Exhibition of 1851 in London. The image of this wonder came
to Notes from the Underground by way of Chernyshevsky’s What Is to Be
Done? (published only a year before), a kind of novelistic allegory of rev-
olution that proved sacred to generations of Russian radicals. In one of
the work’s dream sequences, the heroine, Verochka, glimpses the beautiful
meadows and orchards of a new earth, in the midst of which stands a “pal-
ace” of “cast iron and crystal, crystal and cast iron,” which can be none
other than the Crystal Palace transported from Victorian London into the
engineered world of the future.6 When the Underground Man mocks as a
Crystal Palace fantasy the ambition of constructing a world so rational that
nothing will happen, he alludes all but explicitly to Chernyshevsky’s utopia.
According to Chernyshevksy’s ideas, the revolution inaugurating a new
world was to take place within two years of his work’s publication in 1863,
and the progressives at the center of What Is to Be Done?—young doctors
among them—seem inspired with a feeling of impending transformation.
198 THE NOCEBO EFFECT

Their work, while mysterious and momentous, nevertheless appears almost


easy, and not just because it’s assisted by the tide of history. Their work is
easy because the only thing required to liberate people from the oppressive
weight of tradition is to make them aware that they have every right to be
free and happy: to raise their consciousness. As Chernyshevsky asks his
own heroine rhetorically at one point, “What’s strange in your wanting to
be a free and happy person? That desire is neither a very puzzling discovery
of science nor a great feat of heroism.”7 The millennium will occur when
people in general become aware of the same obvious truth as Verochka.
Hectoring the reader as the Underground Man would do in turn, Cher-
nyshevksy says at the end of a chapter:

You can become an equal of the people described here in full, if only you
wish to work a bit on your own development. Anyone who is beneath them is
very low indeed. Come up out of your godforsaken underworld, my friends,
come up. It’s not so difficult. Come out into the light of day, where life is
good; the path is easy and inviting . . . No sacrifices are needed, no depriva-
tions required—they’re all unnecessary. Desire to be happy—that’s all.8

Significantly, in a section of What Is to Be Done? summarizing the course


of history, the revolution by which Russia will enter the age of happiness
is represented by a blank on the page. In part this is because the work was
written under censorship, but the expurgation of reality is also a demand of
an imagination that insists on believing that no sacrifices are necessary to
bring about a new age; that once awareness dawns, once people come out of
the shadows and into the light, the new age will already be here.
Positively refusing to come out of his godforsaken underworld, Dosto-
evsky’s narrator disputes every one of Chernyshevsky’s articles of belief, most
polemically perhaps the notion that humanity will flourish in a place where
all of its problems are solved. The Underground Man also specifically denies
that all that stands in the way of universal happiness is a defect of awareness,
as Chernyshevky insists. “Oh, tell me,” says the Underground Man,

who was it who first announced, who first proclaimed that man only does
vile things when he does not know where his real interests lie? and that if
he were enlightened, if his eyes were opened to his real, normal interests, he
would at once cease doing vile things and would immediately become good
and honourable.9

The reader of What Is to Be Done? is given to understand that the major


characters work offstage proselytizing among the people—reminding them
of their real interests, awakening them to their own goodness, raising con-
sciousness. Considering that two of the central figures are doctors, it only
THE MALADY OF AWARENESS 199

stands to reason that the men and women of the future—the inheritors
of enlightenment—are envisioned in What Is to Be Done? as “burst[ing]
with health.”10 The Underground Man not only seems to cross his own
real interests, not only proclaims himself in his degradation an intensely
aware mouse, but shows in everything he says and does that his heightened
consciousness is a source not of health and happiness but the opposite.
By cherishing his sickness and challenging the principle that we pursue
pleasure and shun pain (the axiom of the utilitarian thinking that powers
Chernyshevsky’s novel), the Underground Man also suggests that one can
adopt the sick role not because its benefits outweigh its disadvantages, but
for more paradoxical reasons entirely.

Health vs. Health-Consciousness

To explain the seemingly inexplicable spread of a treatment-resistant dis-


order that has become a public sensation (as with anorexia in Hong Kong
in the 1990s, for example), some say that those affected fashion their symp-
toms unconsciously on models in the news.11 It seems odd to speak of a
process driven by headlines as somehow determined in the secret recesses
of the psyche. But an adopted disorder of this kind appears less inexplicable
if people adopt it precisely because it doesn’t lend itself to medical treat-
ment, in consonance with the Underground Man’s notion that people often
act against their “normal” interests. In this context, media coverage of the
favored disorder and educational campaigns staged to enlighten the pub-
lic about it serve only to spread the disorder by propagating a supposedly
therapeutic awareness.
To esteem awareness as a pure good has become so intuitive that it
seems surprising that anyone could ever have thought otherwise. However,
it used to be an adage that “the healthy know not of their health, but only
the sick”—a saying quoted by Carlyle at the beginning of his 1831 essay
“Characteristics” and that could stand as an epigraph for Notes from the
Underground. Lest we conclude that the critique of awareness belongs to a
nineteenth-century counter-Enlightenment, a savage parody of depression
published by David Foster Wallace in 1998 ends with the heroine—known
only as “the depressed person”—falling into the same noxious cycle of self-
reference as the Underground Man. Pouring out her emotional needs to a
nominal friend who happens to be dying,

the depressed person . . . urged her terminally ill friend to go on, to not hold
back, to let her have it: What terms might be used to describe and assess such
a solipsistic, self-consumed, bottomless emotional vacuum and sponge as
she now appeared to herself to be?12
200 THE NOCEBO EFFECT

A perfectly pitched spoof of the therapeutic idiom, the story satirizes a


misery that has somehow become the point of the heroine’s existence and
the object of her labors; thereby, the story also satirizes awareness itself
as a black hole that engulfs and negates everything. In the same way that
the sick role swallows the heroine, leaving her with no name or identity
other than that of “the depressed person,” awareness takes over the one
who exercises it. In this context depression is nothing but consciousness
of the impossibility of making anyone else understand the depth of your
depression: a vacant tautology.
Though the alternatives to awareness given by our language would seem
to be blindness, ignorance, inattention, and (most shamefully) denial, the
fact is that awareness is overrated. According to a remarkable study of the
ethos of attention woven into Anna Karenina,

A few years ago, cars of a certain brand started lurching forward dangerously.
The manufacturer contended that the car would not lurch if the driver only
paid constant attention, and isn’t that what drivers should do anyway? Not at
all, and to demand as much is to demand the impossible. The manufacturer
might just as well have insisted that drivers float six inches above the seat.

The author continues, “Our minds wander even during the most intense
and engaging activities, and when they do, we operate by habit.”13 Of course
our language tends to deprecate habit, in turn, as a rote performance, a
sort of enacted unawareness. Yet habit is highly operative even in feats of
excellence, such as musical or athletic performances. The performer of a
complicated skill like dribbling a basketball through defenders hasn’t the
time or luxury to attend to each and every movement of the body, even
assuming such a thing were possible, which of course isn’t to say that ath-
letes don’t know what they’re doing. Athletes know what they’re doing pre-
cisely in that their skills are so well honed that they don’t have to concern
themselves with the details in the way someone less trained would. Said
William James, “We walk a beam the better the less we think of the position
of our feet upon it.”14 In the famous mowing scene in Anna Karenina Levin
rejoices in such mastery:

The longer Levin mowed, the oftener he felt the moments of unconscious-
ness in which it seemed that the scythe was mowing by itself .  .  . and as
though by magic, without thinking of it, the work turned out regular and
precise by itself. These were the most blissful moments.15

In effect, “the body has a mind of its own.”16


Some might say that leaving thought to the body is all right for danc-
ers and mowers but not citizens in charge of their health. Yet the notion
THE MALADY OF AWARENESS 201

that citizenship is defined by health-consciousness is a utopian one, in the


sense that it constitutes something like a first principle in the inaugural
work of the modern utopian tradition, More’s Utopia itself. Utopia is a
showcase society, a Crystal Palace writ large, a world with no hiding places
and no mysteries, and it seems to be in keeping with the dictates of trans-
parency that its inhabitants are fully cognizant of the primacy of health
and fully aware of their own healthy bodies. The Utopians, More informs
us, expressly reject the position that health is unconscious of itself. That a
good as fundamental as health could somehow escape perception seems to
offend the intellect of this philosophical people.

Health itself, when undisturbed by pain, gives pleasure, without any exter-
nal excitement at all. Even though it appeals less directly to the senses than
the gross gratifications of eating and drinking, many consider this to be the
greatest pleasure of all . . . [The Utopians] rejected long ago the opinion of
those who doubted whether a stable and tranquil state of health was really
a pleasure, on the grounds that pleasure made itself felt only when aroused
from without . . . The idea that health cannot be felt they consider completely
wrong. Every man who’s awake, they say, feels that he’s in good health—
unless he isn’t.17

It seems the good health of the Utopians just wouldn’t be good enough
if it weren’t also conscious of itself. Whether health automatically entails
awareness (as with the Utopians) or awareness automatically entails lib-
eration (as in Chernyshevsky), awareness seems to be the crux of human
happiness.
In the inflamed consciousness of the Underground Man, Dostoevsky
satirizes this principle.

Assertiveness and Advocacy

The expansion of medical boundaries can’t take place without redefini-


tions, codification of new entities like SAD, and the mass marketing of
illness labels, and so it is that information becomes a carrier of some con-
ditions. Many patients caught up in syndromes that evolve from normal
ills also seem caught up in the lore surrounding them, their condition
becoming a belief system in and of itself. Without a conviction that the
ailment in question is truly disabling it wouldn’t become so intractable
to treatment. While Underground Man does not suffer from SAD (a sup-
posedly specific condition) despite some superficial symptom matches, he
does bear a rough resemblance to someone tangled up in a disabling if
nonspecific syndrome.
202 THE NOCEBO EFFECT

At the turn of the millennium it was noted that

physicians in many medical specialties are increasingly confronted by


patients who have disabling, medically unexplained, somatic symptoms and
who have already arrived at a diagnostic label for their illness. The functional
somatic syndromes have acquired major sociocultural and political dimen-
sions. Their definitive status in public consciousness and popular discourse
contrasts markedly with their still uncertain scientific and biomedical sta-
tus. Patients with these syndromes often have very explicit disease attribu-
tions for their symptoms, and they resist information that contradicts these
attributions. These patients often have a strong sense of assertiveness and
embattled advocacy with respect to their etiologic suppositions, and they
may devalue and dismiss medical authority and epidemiologic evidence that
conflicts with their beliefs.18

Now consider the opening of Notes from the Underground:

I am a sick man . . . I’m a spiteful man . . . I think there is something wrong
with my liver. But I cannot make head or tail of my illness and I’m not
absolutely sure which part of me is sick. I’m not receiving treatment, nor
have I ever done, although I do respect medicine and doctors. Besides, I’m
extremely superstitious, if only in that I respect medicine . . . I know per-
fectly well that I cannot in any way “sully” the doctors by not consulting
them. I know better than anyone that in doing this I shall harm no one but
myself. Anyway, if I’m not receiving medical treatment it’s out of spite. If my
liver is hurting, then let it hurt all the more!19

Clearly, the Underground Man is a master of embattled advocacy.


Like certain patients who somehow get trapped in a syndrome for
which no cause can be found, the Underground Man not only seems to
have a nonspecific complaint (“I’m not absolutely sure which part of me is
sick”) but makes it the badge of his identity (“I am a sick man”) and uses it
to challenge a medical establishment whose authority he does and doesn’t
recognize. And like patients who seek medical help and yet may dispute
medical authority, medicine is a sore point with our narrator. Both the
patients and the Underground Man seem to live and breathe controversy,
the former campaigning for recognition, struggling with insurers, battling
medicine itself, the latter inflecting every word he speaks with a note of
polemical challenge. And in both instances, having the illness goes along
with a special consciousness of having it. The patient armed with a label
for a medically inexplicable condition has the inflamed awareness that sur-
rounds a disorder that has become a cause célèbre and possesses standing
in “public consciousness and popular discourse” regardless of its dubious
credentials in the eyes of medicine. The Underground Man amplifies his
THE MALADY OF AWARENESS 203

condition, whatever it is, by the kind of attention he devotes to it, attention


suggested by the refrain-words “I know perfectly well.” Perhaps his entire
narrative seems infected with biliousness because he theorizes that some-
thing is wrong with his liver. “Patients with these syndromes often have
very explicit disease attributions for their symptoms.”
And because patients with controversial syndromes have definite ideas
about the cause of their distress, they may take offense when those ideas are
contested. A paper written in earnest, not jest, calculates how many diag-
noses of the cause of a contested syndrome are necessary in order to offend
one patient, by analogy with the calculation of the number needed to treat
(NNT) in order to show medical benefit.20 Thus, the explanation that their
symptoms are all in the mind is so potentially offensive that it needs to be
given to only two patients in order to offend one, while the neutral-sounding
explanation of “functional weakness” can be served up to nine. The Under-
ground Man’s touchiness—“I’m sensitive and quick to take offense,” he
says—constitutes yet another resemblance to someone caught up in a disor-
der puzzling to medicine, which is what “functional” actually means.
Searching for a one-for-one match between the Underground Man’s
symptoms and the official symptoms of SAD, we arrive at findings that
misrepresent the Underground Man on the one hand and lend a semblance
of literary support to a questionable diagnostic coinage on the other. The
Underground Man seems less like the advertised SAD sufferer alone in a
restaurant, paralyzed by mere shyness, than like the patient with medically
resistant symptoms who takes up his or her disorder like a cause. Where
the Underground Man lifts ideas, phrases, and aspirations from others,
making his narrative a scrapbook,21 patients with an unspecific syndrome
may find themselves modeling their very experience on illnesses in the
news. Where the Underground Man defies the elementary certainties of
reason (“God Almighty, what do I care about the laws of nature and about
arithmetic, when for some reason I don’t like these laws or ‘twice two is
four’?”), a symptom like fatigue “can neither be scientifically measured
not scientifically disproved,” in the words of Elaine Showalter.22 For what
it’s worth, in discussing CFS Showalter cites cases where sufferers show
no interest in getting better and where symptoms change from month to
month, quite as if the patient were committed to being sick but, like the
Underground Man, not sure which part is sick. Let’s therefore consider this
syndrome more closely.
From 1984 to 1985 in a clinic near Lake Tahoe, Nevada, some 160
patients presented with unexplained symptoms of one sort or another,
but almost all akin to generic symptoms everywhere to be found in the
population at large: headache, dizziness, aching joints, sore throats, and
general weakness. In a move that had the effect of defining and thereby
204 THE NOCEBO EFFECT

intensifying a condition that might otherwise have been too diffuse to con-
stitute an actual disorder—much less to serve as a banner—it was decided
that the cardinal symptom was fatigue. Now with a theme, the disorder
was branded. It was a fatigue disorder. As if the focal symptom served to
rally other ills around it, patients from far and wide began pouring “like
pilgrims” into Reno, the point of origin of the mystery syndrome. The press
picked up the idea that the agent behind this epidemic in the making was
Epstein-Barr virus, an entity whose impressively particular name seemed
to guarantee the specificity of the disorder. Rolling Stone proclaimed
Epstein-Barr a “growing nightmare.”23 With information itself acting as a
virus, cases seemed to increase in tandem with press reports, and support
groups for chronic fatigue patients sprang up around the world. In the UK
the syndrome acquired the formidable name, myalgic encephalomyelitis,
ME for short. Chronic fatigue took on the character of a movement, with
all the familiar trappings of advocacy. Where the Underground Man chal-
lenges the rule of reason with his tonal and other paradoxes, a disorder
whose thematic symptom was debilitating lethargy challenged medicine
with the paradox of vigorous activism.
Candidates for the cause of the disorder multiplied as each proved
groundless, and medical breakthroughs were proclaimed by the press one
after another, all likewise coming to nothing. Uncritical reporting about
the disorder, which overwhelmingly presumed a biological cause, merely
“increased public awareness of symptoms and fueled the epidemic.”24 That
heightened awareness served only to power the nocebo effect poses a com-
ment on the cult of awareness then and now, and on the use of “awareness”
as a crusading banner, incantation, and code-word all at once. (It appears
that as long as people in Hong Kong were unaware of the Western form of
anorexia—anorexia as defined by the DSM—they didn’t manifest that dis-
order, but once it entered the newspapers and public consciousness in the
1990s it exploded.)25 The label that gives a syndrome like chronic fatigue
salience and attracts the notice of the public in the first place may also
make things worse, both by recruiting new sufferers and by “promising a
scientific answer some time in the future.”26
Also said to be caused by some subtle agent that awaited discovery was
the fatigue disorder known as neurasthenia which flourished among the
well-to-do until its disappearance early in the twentieth century. Identified
by the American neurologist George Beard within a few years of Notes from
the Underground, neurasthenia was an encompassing malady whose cardi-
nal symptom was fatigue both mental and muscular. In addition to fatigue,
however, it included an open-ended list of possible symptoms—over 70,
by Beard’s count. “Sufferers from neurasthenia often time wonder and
complain that they have so many symptoms; that their pain and distress
THE MALADY OF AWARENESS 205

attack so many parts and organs.”27 Clearly, without a name to hold them
together, the miscellaneous symptoms of neurasthenia would never cohere.
In this sense, then, the transiently spectacular existence of neurasthenia
testifies to the power of a label to organize and mobilize symptoms. In that
the career of neurasthenia coincided temporally with the discovery, one
after another, of pathogens responsible for infectious disease, this malady
for which a cause couldn’t be found delivered an implied challenge, even
an affront, to the positivism of medicine. So it is with the Underground
Man, who holds himself up as a case of sickness that defies medicine and
rebuts the ideal of a society transformed by the new medical science, as in
Chernyshevsky’s vision of young doctors bringing a rational world to birth.
Syndromes in the tradition of neurasthenia continue to inflame common
symptoms and challenge medicine. The best analysis on record of neur-
asthenia’s successor—CFS itself—characterizes many patients as resentful
and hostile toward medicine and especially psychiatry,28 which approxi-
mates the Underground Man’s attitude toward the champions of reason
and progress.
According to some, “placebo remedies are destined to fill the gap in
knowledge as long as there are illnesses that cannot be treated adequately
and the causes of illness are unknown,”29 but just as new placebos arise on
demand (taking pill form in societies enchanted with pills), so illnesses
that elude understanding, treatment, or both emerge as if to exploit the
knowledge gap and challenge medicine. Among these are many syndromes
that lack laboratory signs—such as neurasthenia or its stepchild chronic
fatigue—and therefore pose a special enigma for medical science. Rather
than using a psychiatric codebook as the key to understanding the Under-
ground Man, we might consult the Underground Man to make better sense
of conditions that contest medicine itself.30
Epilogue

Return to Sources

Gadamer on Medicine

Though it would seem as difficult to argue against awareness as to extol


blindness and ignorance, rising claims of illness and disability in recent
decades have been convincingly linked to “an increased awareness of and
attention to health matters” in an anxiety-inducing medical marketplace.1
And as it happens, there is something to be said for blindness and igno-
rance. According to Aeschylus, the hero Prometheus not only endowed
mortals with fire but caused them to cease foreseeing their own death and
inspired them with blind hopes; according to the interpretation of this leg-
end given by Hans-Georg Gadamer in his reflections on medicine, it was
the hopes excited in mortals freed from the oppressive awareness of death
that enabled them to apply the gift of fire.2 The act of blinding mortals to
the future, thereby opening it to human works, is described by the chorus
of Prometheus Bound as the cure of a sickness.
As Gadamer sees it, health itself depends on a certain inattention, even
on the doctor’s part. The doctor doesn’t undertake to screen the public
and doesn’t look for business. The patient seeks out the doctor, not the
other way around—“In general it is the recognition that he or she is ill . . .
that leads the patient to go to the doctor”—and with those who do pres-
ent themselves the doctor uses a judiciously modest approach. “No doctor
can presume to want to exercise control over the patient.” If Prometheus
served mortals by depriving them of “the knowledge of the hour of [their]
death,”3 the doctor serves the patient by his or her renunciation of the sort
of pretense of mastery and imperial knowledge put on by doctors like those
we meet in Tolstoy.
Gadamer’s comments on the Prometheus myth are embedded in a phi-
losophy of medicine whose cautious spirit stands as a reproach to thera-
peutic activism. Good doctors, according to Gadamer, use restraint and
208 THE NOCEBO EFFECT

have a sense of their own limits because, above all, they understand that
they can’t make a patient well.

Doctors can never completely entertain the illusion that health is something
they simply “make” or which they can fully control .  .  . [Medicine] must
participate in the wonderful capacity of life to renew itself, to set itself aright.
The real task which confronts the doctor is that of assisting in this process of
restoration or recovery.

The process is necessarily a delicate one—more delicate, certainly, than


checking passersby for signs of trauma or doing blood tests in a parking
lot. “Doctors must always hold themselves back in order to be able to guide
their patients with a cautious hand and allow a patient’s natural condition
to restore itself.” The same is true for therapists tempted by activism. If the
evidence of clinical trials runs against the practice of “debriefing” trauma
victims, the reason may be that the intervention itself hinders the capacity
for recovery, just as it substitutes a clinical procedure for ordinary ways of
dealing with distress.4
Unless doctors (and therapists) exercised their influence with care, it
would be only too easy to abuse it. “The predicament of doctors is defined
by their capacity for inspiring trust but also and equally by the necessity of
limiting the use of their professional power and influence . . . They must
know when to stand back.”5 If the Gadamerian doctor cultivates any kind
of awareness, it would be this finely tuned sense of when to refrain, a skill
as important as any technical ability in his or her possession. Restraint is
the saving grace of medicine. Gadamer likens health to a state of balance,
implying that it can be thrown off by “too powerful an intervention .  .  .
This should warn us against the unnecessary prescription of medicines.”6
What Gadamer would think of the prescription of psychoactive drugs to a
significant percentage of American children is easy to imagine.
If health is too elusive for the doctor to control or manage, for the per-
son in health it eludes perception, according to Gadamer. In the tradition
of Montaigne’s maxim, “We are far less aware of perfect health than of the
slightest illness,” Gadamer believes it the nature of illness to make us aware
where before we were untroubled by awareness.

I know only too well how illness can make us insistently aware of our bodily
nature by creating a disturbance in something which normally, in its very
freedom from disturbance, almost completely escapes our attention .  .  .
What is well-being if it is not precisely this condition of not noticing?

Thus, while it makes sense to ask if someone feels ill, it “would border on
the absurd to ask someone, ‘Do you feel healthy?’ Health is not a condition
RETURN TO SOURCES 209

that one introspectively feels in oneself.”7 Ads, checklists, questionnaires


prompting us to look for symptoms thus play to a kind of detection bias, a
leaning in favor of things that lend themselves to notice in the first place.
Recurring like a refrain in Gadamer’s meditations on medicine is the image
of health as a state of equilibrium, bringing to mind William James’s notion
that “we walk a beam the better the less we think of the position of our feet
upon it.”8
Unawareness has more to recommend it than we might suppose, and
the same is true of its sibling, forgetting. It appears that just because some
degree of depression is a normal event as opposed to a pathology, we tend
to forget episodes of depression, or sadness, with the years; hence the
paradoxical finding that the older people are, the less they seem to report
retrospectively.

Failure to recall lifetime episodes was shown to be greater for major


depression than for other disorders, suggesting that its criteria capture less
important (and forgettable) depressive states. Studies that assess cohorts at
intervals to overcome forgotten episodes report much higher rates of life-
time depression.9

Despite being classified as “major” by psychiatry, much depression seems


to be transitory (which helps explain why undiagnosed cases may fare as
well as treated ones, or better). Such episodes may not present themselves
to memory because they dissolve into the flow of life and lack salience;
beyond this, forgetting them may be a sign of health. Oblivion is in fact a
daily necessity of our existence, as Gadamer points out.
Not only does Gadamer hold that health defies awareness and that
heightened awareness doesn’t conduce to health (for health “does not con-
sist in an increasing concern for every fluctuation in one’s general physical
condition”), but he reminds us that descent into the Lethe of sleep is vital
to health. “One of the most important healing powers in our lives resides
in the ability every evening to sink into the healing sleep of forgetfulness.”10
By the same token, an irony of the overdiagnosis of depression is that the
antidepressants in favor disturb sleep, to the point that doctors sometimes
prescribe another antidepressant to correct the problem—trazodone.11
Disordered sleep is also a common side effect of the ADHD drug, Ritalin.
Deeply embedded in the dailiness of life, the healing effect of sleep
recedes into the background of things. Such is the association of sleep
with healing that it seems perfectly fitting for Othello’s torturer to invoke it
negatively: “Not poppy nor mandragora / Nor all the drowsy syrups of the
world / Shall ever medicine thee to that sweet sleep / Which thou owedst
yesterday.” The wording is original, but not the thought. The sweetness of
210 THE NOCEBO EFFECT

sleep, its power to release from trouble and restore strength, is so ancient an
idea that it seems fully presumed in the Odyssey, built into the poem’s very
structure. In a poem where the giving and receiving of gifts are ligatures
of social life, sleep itself is often given and received, as when Athena sheds
a sweet sleep over Penelope’s eyes—at least for a while (19.604; 21.358).12
Earlier, Telemachus, Odysseus and the swineherd Eumaeus, after eating,
also accept the gift of sleep (16.481). So too, as the hero is conveyed back
to Ithaca at last by the Phaeacians, there descends on him a profound sleep,
deathlike but without the bitterness of death (13.79–81), as if nothing less
than this draught of Lethe could release Odysseus from the travail of his
adventures and prepare him for the severe tests awaiting in Ithaca. Such
episodes of sleep punctuate the Odyssey, contributing to its ornate, highly
patterned texture.

A Hero Asleep

“Awareness” suggests wariness, being on guard, and Odysseus is shown as


a hero of wariness—his undercover return to his own palace standing in
direct contrast with the counterpart story of Agamemnon striding right
into a deathtrap upon his return from Troy. Yet even Odysseus can overdo
awareness. Following the adventure with the Cyclops, the hero and his
companions sail for Ithaca, with Odysseus insisting on manning the sail
himself, until on the tenth day as the shore of Ithaca comes into view, he
falls into a dead sleep of exhaustion. With their suspicions perhaps aroused
by his evident wariness of them, his men peer into the bag of winds, and
from that moment none of them will see Ithaca again (10.28–34). Had he
been less insistent on managing the sail, which implies both an intense
wariness of others and a trust in his own power to remain awake beyond
human capacity, years might have been cut from his journey home and
many others would have been spared death.
While this isn’t the only time disaster ensues from a decision made by
Odysseus’s men while he sleeps, sleep in the Odyssey is far more than a lapse
of wariness or interruption of activity. The Odyssey richly bears out the sweet-
ness of sleep13—and the bitterness of its denial. Tormented with insomnia,
Penelope remarks to herself in Book 20 that even grief like her own can be
borne as long as it can be dissolved in the oblivion of sleep; later, while Odys-
seus executes the suitors she enjoys a sleep more profound than any she has
had since he left for Troy 20 years before, as if her suffering were in fact being
healed. Sleep is so bound up with trouble and drama in the Odyssey that
it acquires the importance of a structural principle. Many books end with
sleep, as if the poem’s very composition were marking the periodic return to
unconsciousness by which we recover from the storm of events.
RETURN TO SOURCES 211

At the end of Book 5, as the raft-wrecked Odysseus falls into a deep


sleep under a mass of leaves in the forest of Scheria, an extended simile
likens him to a log buried under ash to preserve an ember of fire, with the
implication that sleep preserves life. It is Athena herself who sends Odys-
seus sleep in this instance—his first encounter with the goddess since his
departure from Troy. So battered is the hero at this point that only a divine
infusion of sleep can possibly refresh his strength. A day later, as he retires
as if to gather strength for all that lies ahead, including the telling of his
adventures, the thought of sleep is dear to him (7.343). In contrast, the end
of Book 1 of the Odyssey finds Telemachus pondering the words of Athena
all night, seemingly sleepless, perhaps a sign that he hasn’t yet found and
exerted his strength and so achieved sleep through his actions.14 Book 20
presents a rich contrast between the care-releasing sleep given to Odysseus
by Athena like a gift and the denial to Penelope of the one thing that could
make her plight bearable, sleep itself.
It might seem paradoxical that a poem celebrating the exploits of Odys-
seus should time and again show him overcome by sleep, but sleep mea-
sures the extremity of his efforts, as when he finally succumbs to exhaustion
just as his ship nears Ithaca, only to have his men open the bag of winds.15
And because his ordeals follow one after another, only by replenishing his
strength in sleep could he possibly find the stamina to undergo a new test
as soon as one is completed. It’s poetically just that the Athena who sends
Odysseus a peaceful sleep releasing him from trouble should also, and in
the same book, incite the suitors to further outrages in order to heighten
his torment, because the strength renewed with sleep enables him to with-
stand the suitors’ insolence. If, as Gadamer says, health “belongs to that
miraculous capacity we have to forget ourselves,”16 the sleep that comes
to Odysseus as he lies in anguish, thinking of the suitors and their con-
sorts, allows him to forget his injuries. (This, then, is the oblivion denied
Penelope.) Before sleeping he was torn two ways about what to do with the
unfaithful maids; after sleep he is undivided, whole—in health.
Athena’s dismissal of Odysseus’s troubles is worthy of note. While some
of Odysseus’s ordeals are physical (such as a pummeling at the hands of
Poseidon), perhaps his outstanding quality is the circumspection, the
reflectiveness, that refrains from killing the Cyclops when it would only
mean entombment and from killing the suitors until the time is right.
Whereas the suitors seem thoughtless—not even bothering to ask how
they can get away with brazenly violating the laws of Zeus governing hosts
and guests—Odysseus is at once aware and wary, and heroic in both; but in
order to maintain his powers, he must sooner or later descend into sleep.
At the end of book 5, stripped of strength just as he is stripped of pos-
sessions and even clothes, he falls asleep of exhaustion, but no sooner is
212 THE NOCEBO EFFECT

he awakened by the princess Nausicaa and her companions in the next


book than he is filled with strength and proceeds to address her with great
rhetorical skill, completely like himself again. It’s as if in sleep Odysseus
returned to the sources of his power. Even his most distinctive ability, skill
in deceit, is renewed in this way, as when he wakes up in Ithaca only to
deliver a fluent series of lies to the disguised Athena. Even for the wariest
of heroes the periodic loss of awareness is vital. Sleep, says Gadamer, is “one
of the greatest enigmas we experience in our lives.”17

Medicine and Story

At one point in the Odyssey a medicine produces the release from care
elsewhere associated with the healing power of sleep. In search of informa-
tion about Odysseus, Telemachus and a son of Nestor are received royally
by Menelaus and Helen, the latter of whom concludes the supper by mixing
a subtle Egyptian drug into the wine. If sleep in the Odyssey releases the
mind’s distress, the properties of this anodyne are such (we are told) that
if you drink it you would not feel distress even if your own brother or son
were murdered in front of your eyes. Helen doesn’t mix the mysterious
compound into the wine surreptitiously, as Circe poisons Odysseus’s men,
but in full view, as part of a richly social proceeding. Presumably she tells
the men of the drug’s properties, thereby priming their expectations, just
as she tells them to pour the wine. Not only, then are the giving and receiv-
ing of gifts central to social life in the Odyssey, but the giving and taking of
a drug are shown as social acts in themselves—as social as the telling and
hearing of stories with their own enchanting effect. Indeed, once the wine
is drunk, what follows are stories; nothing more is said about the mystery
drug, as if it had dissolved not just into the wine but the occasion.
Does medicine still resemble a social transaction? It has been shown
that even as potent a drug as morphine produces a greater effect when
administered openly, as part of a medical ritual, than when given to
patients without their knowledge. This isn’t an anomalous or stand-alone
finding but one of many pointing to the conclusion that medicine is much
more of a social proceeding than commonly supposed. If the very ordi-
nariness of sleep may obscure its enigmatic power, the social background
underwriting the power of the placebo may escape notice precisely because
it is background. Factors that play into therapeutic outcomes

range from the treatment’s characteristics (colour and shape of a pill) to


the patient and provider’s characteristics (treatment and illness beliefs, sta-
tus and sex) and from the patient-provider relationship (suggestion, reas-
surance, and compassion) to the healthcare setting (home or hospital) and
RETURN TO SOURCES 213

room layout. Thus, the [treatment] context is made up of anything that sur-
rounds the patient under treatment, including doctors, nurses, hospitals,
syringes, pills, machines, and such like, but certainly doctors and nurses are
a very important component of the context, as they can transmit a lot of
information to the patient through their words, attitudes and behaviours.18

The therapeutic power of words is idealized in the story of the boy Odys-
seus being healed with incantations after a gashing by a boar on Mount
Parnassus. For that matter, we might consider Menelaus’s gleaming, well-
ordered palace, with its attentive staff and exemplary hospitality, as a sort
of ideal hospital or clinic in which a heartsick Telemachus finds strength
and solace, as well as reassurance that he is his father’s son—something he
professed in Book 1 to doubt.19
But the value and interest of literature to the student of medicine go
well beyond direct depictions of healing. If the prosaic context of treat-
ment, including everything from the layout of rooms to the garb of nurses,
is powerful enough to transform inert substances into treatments (as the
placebo literature documents), then novelists are right to believe that
rooms, costumes, colors, and all the other props, cues, and furnishings
of social life, right down to the boxes pills arrive in, merit description. It
seems Montaigne was correct: The most ordinary things, the things that
easily escape specific notice, may be sources of wonder.20
Precisely because the power of the placebo is rooted in circumstance
and social cues, the author of a seminal study of the placebo effect in
psychotherapy concludes that there can be nothing like an exhaustive
list of the factors that enable therapy to occur. “Aspects of the context
that determine the meanings of utterances include the words themselves,
facial expressions, gestures, tone of voice, as well as background features
of the interaction .  .  . The list of potential determinants of the mean-
ings of all human interactions is endless.”21 Henry James said it better:
“Really, universally, relations stop nowhere, and the exquisite problem
of the artist is eternally but to draw, by a geometry of his own, the circle
within which they shall happily appear to do so.”22 The finding that words
feed the power of the placebo—that patients pick up on a doctor’s tone
of voice,23 for example, and frame treatment expectations accordingly—
comes as no surprise to readers who continually witness the effect of
words on the page.
Medicalization turns normal conditions into health problems by engag-
ing the power of the imagination, the same power sufficient to transform
the social packaging and ritual context of treatment into a species of treat-
ment per se. Works of the imagination thus take us to the power source
of the medicalization movement.24 In opening I suggested that an era of
214 THE NOCEBO EFFECT

aggressive medical expansion has much to gain from the spirit of skep-
ticism that went into the making of the humanities. It now appears that
perhaps only the literature of the imagination can enlighten our under-
standing of a process that plays daily on the imagination itself.
Two implications of the power of context follow. First, because context
is so inclusive and open-ended (“relations stop nowhere”), and because the
placebo effect is so context-dependent that it can be understood as a con-
text effect,25 it’s impossible to pinpoint a source of the power of the placebo.
We can’t isolate and test a single factor responsible for the placebo effect
because an entire ensemble of confounders goes into its making. Whether
or not the placebo effect operates nonspecifically on a patient, it’s nonspe-
cific in origin. Second, if the placebo effect can’t be reduced to the expecta-
tion elicited by a white coat or a confident tone or the look of a pill (for all
and much more are at work), neither can the power of suggestion itself be
reduced to the placebo effect. A double-edged sword, suggestion also takes
a noxious form; and the diagnostic trends that sweep through society at
large in an era of medicalization—trends that could never be captured and
calculated in a laboratory—are powerful conductors of this negative force.
Notes

Preamble

1. Hannah Arendt, The Human Condition (Chicago: University of Chicago Press,


1958), p. 50.
2. Robert Hahn, “The Nocebo Phenomenon: Concept, Evidence, and Implica-
tions for Public Health,” Preventive Medicine 26 (1997): 610.
3. See David Healy, Pharmageddon (Berkeley: University of California Press,
2012), p. 37.
4. See Peter Conrad, The Medicalization of Society: On the Transformation
of Human Conditions into Treatable Disorders (Baltimore: Johns Hopkins
University Press, 2007), p. 150.
5. Harold Pincus, Wendy Wakefield Davis, and Laurie McQueen, “‘Subthreshold’
Mental Disorders: A Review and Synthesis of Studies on [sic] Minor Depres-
sion and Other ‘Brand Names,’” British Journal of Psychiatry 174 (1999): 288.
6. See Richard McNally, Richard Bryant, and Anke Ehlers, “Does Early Psycholog-
ical Intervention Promote Recovery from Posttraumatic Stress?” Psychological
Science in the Public Interest 4 (2003): 46.
7. See Ben Goldacre, Bad Pharma: How Drug Companies Mislead Doctors and
Harm the Public (New York: Faber and Faber, 2012), p. 261.
8. Ronald Kessler, Patricia Berglund, Olga Demler et al., “Lifetime Prevalence and
Age-of-Onset Distributions of DSM-IV Disorders in the National Comorbidity
Survey Replication,” Archives of General Psychiatry 62 (2005): 593–602.
9. See Conrad, Medicalization of Society, p. 41.
10. Priya Raghubir and Geeta Menon, “Depressed or Just Blue? The Persuasive
Effects of a Self-Diagnosis Inventory,” Journal of Applied Social Psychology 35
(2005): 2554.
11. Francine Shapiro and Margot Silk Forrest, EMDR: The Breakthrough Therapy
for Overcoming Anxiety, Stress, and Trauma (New York: Basic, 2004; orig. pub.
1997), p. 176.
12. William Copeland, Lily Shanahan, E. Jane Costello et al., “Cumulative Prev-
alence of Psychiatric Disorders by Young Adulthood: A Prospective Cohort
Analysis from the Great Smoky Mountains Study,” Journal of the American
Academy of Child and Adolescent Psychiatry 50 (2011): 252–61.
13. See Allan Horwitz and Jerome Wakefield, The Loss of Sadness: How Psychia-
try Transformed Normal Sorrow into Depressive Disorder (Oxford: Oxford
University Press, 2007), p. 215.
216 NOTES

Chapter 1

1. Yuko Kawanishi, “Somatization of Asians: An Artifact of Western Medicaliza-


tion?” Transcultural Psychiatric Research Review 29 (1992): 5–36.
2. Cf. Derek Summerfield, “Depression: Epidemic or Pseudo-Epidemic,” Journal
of the Royal Society of Medicine 99 (2006): 161–62.
3. Allan Janik and Stephen Toulmin, Wittgenstein’s Vienna (Chicago: Ivan R. Dee,
1996).
4. Alan Stone, “Law, Science, and Psychiatric Malpractice: A Response to Kler-
man’s Indictment of Psychoanalytic Psychiatry,” American Journal of Psychiatry
147 (1990): 419–27.
5. William Frosch, cited in Mitchell Wilson, “DSM-III and the Transformation of
American Psychiatry: A History,” American Journal of Psychiatry 150 (1993):
407. Noting that Robert Spitzer assumed leadership of the Task Force amid
a crisis of legitimacy in American psychiatry, Hannah Decker adds, “We are
used to seeing such a pattern in history on a larger scale. An illustration of
this occurred in the sixteenth century when a crisis in the Roman Catholic
Church was taken in hand by an ardently devoted and charismatic monk and
theologian, Martin Luther. The Protestant Reformation resulted. This is not at
all to compare Spitzer to Luther nor DSM-III to the Protestant Reformation.”
Hannah Decker, The Making of DSM-III: A Diagnostic Manual’s Conquest of
American Psychiatry (Oxford: Oxford University Press, 2013), p. 83.
6. Interview with Edward Shorter in Shorter’s How Everyone Became Depressed:
The Rise and Fall of the Nervous Breakdown (Oxford: Oxford University Press,
2013), p. 132. Cf. Joseph Matarazzo, “The Reliability of Psychiatric and Psycho-
logical Diagnosis,” Clinical Psychology Review 3 (1983): 103–45.
7. T. M. Luhrmann, Of Two Minds: An Anthropologist Looks at American Psy-
chiatry (New York: Vintage, 2001), p. 224. Cf. Maurice Temerlin, “Suggestion
Effects in Psychiatric Diagnosis,” Journal of Nervous and Mental Disease 147
(1968): 352, 353.
8. Cited in Decker, The Making of DSM-III, p. 27. On the confused state of psy-
chiatry, cf. George Engel, “The Need for a New Medical Model: A Challenge for
Biomedicine,” Science, April 8, 1977: 129.
9. Robert Spitzer and Jerome Wakefield, “DSM-IV Diagnostic Criterion for
Clinical Significance: Does It Help Solve the False Positive Problem?” American
Journal of Psychiatry 156 (1999): 1856.
10. Allan Frances, Saving Normal: An Insider’s Revolt against Out-of-Control Psy-
chiatric Diagnosis, DSM-V, Big Pharma, and the Medicalization of Ordinary Life
(New York: William Morrow, 2013), p. 67.
11. Foreword to Allan Horwitz and Jerome Wakefield, The Loss of Sadness: How
Psychiatry Transformed Normal Sorrow into Depressive Disorder (Oxford:
Oxford University Press, 2007), p. viii.
12. Wilson, “DSM-III and the Transformation of American Psychiatry”: 408.
13. Ethan Watters, Crazy Like Us: The Globalization of the American Psyche (New
York: Free Press, 2010), p. 3.
NOTES 217

14. The diagnosis of ADHD is so DSM-dependent that studies using successive


editions of the manual find rising rates of ADHD, with DSM-III producing
a 3.9 percent prevalence, DSM-III-R 5.8 percent, and DSM-IV 6.3 percent.
DSM-V is expected to follow suit. See Rae Thomas, Geoffrey Mitchell, and
Laura Batstra, “Attention-deficit/Hyperactivity Disorder: Are We Helping or
Harming?” BMJ 347 (2013): f6172. On the DSM and the diagnosis of depres-
sion, see also Ronald Dworkin, “The Medicalization of Unhappiness,” Public
Interest (2001): 85–99.
15. Lee Robins, “Diagnostic Grammar and Assessment: Translating Criteria into
Questions,” Psychological Medicine 19 (1989): 63.
16. Simon Gilbody, Trevor Sheldon, and Simon Wessely, “Should We Screen for
Depression?” BMJ 332 (2006): 1027.
17. John Feighner, Eli Robins, and Samuel Guze, “Diagnostic Criteria for Use in
Psychiatric Research,” Archives of General Psychiatry 26 (1972): 57–63.
18. Kenneth Kendler, Rodrigo Muñoz, and George Murphy, “The Development of
the Feighner Criteria: A Historical Perspective,” American Journal of Psychiatry
167 (2010): 136.
19. Kurt Kroenke, Robert Spitzer, Janet Williams et al., “Physical Symptoms in Pri-
mary Care: Predictors of Psychiatric Disorders and Functional Impairment,”
Archives of Family Medicine 3 (1994): 776.
20. On the illusory specificity of depression, see Hermann van Praag,
“Nosologomania: A Disorder of Psychiatry,” World Journal of Biological Psychia-
try 1 (2000): 151–58; Christopher Dowrick, Beyond Depression: A New Approach
to Understanding and Management (Oxford: Oxford University Press, 2009).
21. Darrel Regier, William Narrow, Emily Kuhl et al., “The Conceptual Develop-
ment of DSM-V,” American Journal of Psychiatry 166 (2009): 646.
22. Allen Frances, comment on Robert Spitzer and Janet Williams, “Having
a Dream: A Research Strategy for DSM-IV,” in The Validity of Psychiatric
Diagnosis, eds. Lee Robins and James Barrett (New York: Raven Press, 1989),
p. 301.
23. David Cohen, Shannon Hughes, and David Jacobs, “The Deficiencies of Drug
Treatment Research: The Case of Strattera™,” in Rethinking ADHD: From Brain to
Culture, eds. Sami Timimi and Jonathan Leo (Basingstoke: Palgrave Macmillan,
2009), pp. 317–18.
24. Joanna Moncrieff, The Myth of the Chemical Cure: A Critique of Psychiatric Drug
Treatment (New York: Palgrave Macmillan, 2008), p. 204; Stephen Faraone,
Thomas Spencer, C. Brendan Montano et al., “Attention-Deficit/Hyperactivity
Disorder in Adults: A Survey of Current Practice in Psychiatry and Primary
Care,” Archives of Internal Medicine 164 (2004): 1221–26.
25. James McGough, Susan Smalley, James McCracken et al., “Psychiatric Comor-
bidity in Adult Attention Deficit Hyperactivity Disorder: Findings from Multi-
plex Families,” American Journal of Psychiatry 162 (2005): 1621–27.
26. “Antidepressants are prescribed for a wide range of common mental disorders
in primary care settings.” Vivien Hunot, Rob Horne, Morven Leese et al., “A
Cohort Study of Adherence to Antidepressants in Primary Care: The Influence
218 NOTES

of Antidepressant Concerns and Treatment Preferences,” Primary Care Com-


panion to the Journal of Clinical Psychiatry 9 (2007): 91. On the use of antide-
pressants to treat miscellaneous complaints including “abnormal sensations,”
see Ramin Mojtabai and Mark Olfson, “Proportion of Antidepressants Pre-
scribed without a Psychiatric Diagnosis Is Growing,” Health Affairs 30 (2011):
1434–42. On SSRIs as “lifestyle” drugs, see R. Flower, “Pharmacology 2.0,
Medicine, Drugs and Human Enhancement,” Quarterly Journal of Medicine
105 (2012): 823–30.
27. Frances Abbott and Mary Fraser, “Use and Abuse of Over-the-Counter Anal-
gesic Agents,” Journal of Psychiatry and Neuroscience 23 (1998): 26, 25.
28. Cf. Geoffrey Bowker and Susan Leigh Star, Sorting Things Out: Classification
and Its Consequences (Cambridge, MA: MIT Press, 2000), p. 118.
29. Cf. Rick Mayes and Allan Horwitz, “DSM-III and the Revolution in the Clas-
sification of Mental Illness,” Journal of the History of the Behavioral Sciences 41
(2005): 258: “In time, the DSM-III created new and enormous incentives for
pharmaceutical companies to create new drugs.”
30. Pat Bracken, Philip Thomas, Sami Timimi et al., “Psychiatry beyond the Cur-
rent Paradigm,” British Journal of Psychiatry 201 (2012): 431.
31. Irving Kirsch, The Emperor’s New Drugs: Exploding the Antidepressant Myth
(New York: Basic, 2010). Ironically, according to Kirsch it is only because of
their side effects that SSRIs yield positive findings in clinical trials.
32. The ad is shown in Barbara Mintzes, “Direct to Consumer Advertising Is Medi-
calising Normal Human Experience,” BMJ 324 (2002): 908–9. Something very
similar appeared on American television; on which see Nikolas Rose, “Becom-
ing Neurochemical Selves” in Biotechnology: Between Commerce and Civil Soci-
ety, ed. Nico Stehr (New Brunswick, NJ: Transaction, 2004), p. 116.
33. The Introduction to DSM-III disavows the principle of specificity that informs
the taxonomy itself, stating that “in DSM-III there is no assumption that each
mental disorder is a discrete entity with sharp boundaries (discontinuity)
between it and other mental disorders, as well as between it and No Mental
Disorder.” This is like an ad disclaiming its own messages.
34. Jeremy Greene, Generic: The Unbranding of Modern Medicine (Baltimore: Johns
Hopkins University Press, 2104), p. 46.
35. Cf. Stephen Toulmin, Cosmopolis: The Hidden Agenda of Modernity (Chicago: Uni-
versity of Chicago Press, 1990), pp. 163–64: “In Europe and North America, nota-
bly in countries with a Puritan culture, individual human beings were expected to
execute their life projects without letting themselves be ‘carried away’ by their feel-
ings or turning for help to priests or doctors or anyone else . . . For the generation of
the 1960s, that undervaluation of the emotions was at an end . . . Being in therapy
was no longer a mark of weakness: now, it became a mark of true seriousness.”
36. Sources are: Marcia Angell, “The Epidemic of Mental Illness: Why?” New York
Review of Books, June 23, 2011; and Shorter, How Everyone Became Depressed,
p. 172.
37. Frances, Saving Normal, p. xiii; see also the interview with Frances in the New
York Times, April 19, 1994.
NOTES 219

38. John Helzer and Lee Robins, “The Diagnostic Interview Schedule: Its Develop-
ment, Evolution, and Use,” Social Psychiatry and Psychiatric Epidemiology 23
(1988): 6–16.
39. Robert Spitzer and Jerome Wakefield, “DSM-IV Diagnostic Criterion for Clin-
ical Significance: Does It Help Solve the False Positive Problem?” American
Journal of Psychiatry 156 (1999): 1863.
40. On this dogma as well as the overdiagnosis of depression, see Summerfield,
“Depression: Epidemic or Pseudo-Epidemic.”
41. Christopher Dowrick and Allen Frances, “Medicalising Unhappiness: New
Classification of Depression Risks More Patients Being Put on Drug Treatment
from Which They Will Not Benefit,” BMJ 347 (2013): f7410.
42. Michael Klinkman, James Coyne, Susan Gallo et al., “False Positives, False Neg-
atives, and the Validity of the Diagnosis of Major Depression in Primary Care,”
Archives of Family Medicine 7 (1998): 451–61.
43. Clinical Psychiatry: A Textbook for Students and Physicians, abstracted and
adapted from the 7th German edition of Kraepelin’s Lehrbuch der Psychiatrie, ed.
A. Ross Diefendorf (New York: Macmillan, 1923), pp. 386–390 passim.
44. Cf. Katharina Trede, Paola Salvatore, Christopher Baethge et al., “Manic-
Depressive Illness: Evolution in Kraepelin’s Textbook, 1883–1926,” Harvard
Review of Psychiatry 13 (2005): 162: “It . . . appears that his case sampling was
strongly biased toward limited contacts with the relatively poor patients with
severe disorders found in public institutions of the era.”
45. Cited in David Healy, Pharmageddon (Berkeley: University of California Press,
2012), p. 177.
46. Walter Cassidy, Norris Flanagan, Marie Spellman, and Mandel Cohen, “Clinical
Observations in [sic] Manic-Depressive Disease,” JAMA 164 (1957): 1535–46.
47. Walter Cassidy, quoted in Kendler, Muñoz, Murphy, et al., “The Development
of the Feighner Criteria”: 136.
48. David Brody, Steven Hahn, and Robert Spitzer, “Identifying Patients with
Depression in the Primary Care Setting: A More Efficient Method,” Archives
of Internal Medicine 158 (1998): 2469. For an example of a crude test for
depression that yielded a positive rate of over 50 percent, see David Kessler,
Keith Lloyd, Glyn Lewis et al., “Cross Sectional Study of Symptom Attribu-
tion and Recognition of Depression and Anxiety in Primary Care,” BMJ 318;
7181 (1999): 436–40. Also see the commentary immediately following by Iona
Heath, “There Must Be Limits to the Medicalisation of Human Distress.” In
a 1978 survey of 242 teachers that defined depression as “a significant lower-
ing of mood, with or without feelings of guilt, hopelessness and helplessness,
or a drop in one’s self-esteem or self-regard,” fully 95 percent reported such
episodes, “with a mean of six . . . per year.” See Gordon Parker, “Is Depression
Overdiagnosed? Yes,” BMJ 335 (Aug. 18, 2007): 328.
49. Marcus Reidenberg and David Lowenthal, “Adverse Nondrug Reactions,” New
England Journal of Medicine 279 (1968): 678–79.
50. Considering that placebo groups in clinical trials regularly report adverse
effects, some might say the adverse effects leading patients to discontinue
220 NOTES

SSRIs are not necessarily owing to the drugs themselves. See, e.g., Winfried
Rief, Stefan Hofmann, and Yvonne Nestoriuc, “The Power of Expectation—
Understanding the Placebo and Nocebo Phenomenon,” Social and Personality
Psychology Compass 2/4 (2008): 1624–37. Nevertheless, the most cogent expla-
nation of the results of antidepressant clinical trials, including those buried
by their sponsors, is that members of the treatment group break the blind by
identifying the unpleasant effects of the drug. See Kirsch, The Emperor’s New
Drugs, esp. p. 128: “If placebos can induce side effects, antidepressants produce
significantly more of them.” Moreover, if placebo takers report side effects,
it’s probably (as Rief et al. propose) because they ascribe to the studied drug
the sort of ills common in a healthy population—ills made more salient by the
conditions of the study. If we err to take such reports as information about the
drug, why is it correct to interpret similar ills as evidence of clinical depression
in a primary-care patient who doesn’t claim to be depressed?
51. On the paradoxical effects of antidepressants, see Joanna Moncrieff and David
Cohen, “Do Antidepressants Cure or Create Abnormal Brain States?” PLOS
Medicine, June 6, 2006; DOI: 10.1371/journal.pmed.0030240. Commonly
reported side effects of the ADHD drug Ritalin, including weight loss, insom-
nia, and loss of interest, read like a depression checklist. Indeed, they include
depression itself—understood as a symptom of the same order as the others.
52. Cassidy, Flanagan, Spellman, and Cohen, “Clinical Observations in [sic]
Manic-Depressive Disease”: 1535, 1543.
53. Cf. van Praag, “Nosologomania”: 154.
54. David Healy, “Shaping the Intimate: Influences on the Experience of Everyday
Nerves,” Social Studies of Science 34 (2009): 219–45.
55. C. V. R. Blacker and A. W. Clare, “The Prevalence and Treatment of Depression
in General Practice,” Psychopharmacology 95 (1988): S16.
56. On depression as both symptom and diagnosis, see M. Drury, The Danger
of Words (New York: Humanities Press, 1973), p. 3. The author advises, “Let
us beware lest from this unsystematic nomenclature suppositions are drawn,
which then become presumptions and only too easily pass over into established
truths” (ibid.). DSM-IV lists fatigue, disordered sleep, and depression as symp-
toms of Postconcussion Syndrome. On the nonspecific nature of the diagnosis,
see Erica Wang and Felise Zollman, “Postconcussion Syndrome: Diagnostic
Characteristics and Clinical Manifestations,” in Manual of Traumatic Brain
Injury, ed. Felise Zollman (New York: Demos Medical, 2011), pp. 113–18.
57. Allan Horwitz, Creating Mental Illness (Chicago: University of Chicago Press,
2002), p. 45. Built into the history of the term “neurosis” was a presumption that
presenting symptoms were of psychic origin. See Drury, The Danger of Words, p. 4.
58. On the quest for underlying explanations, see Ludwig Wittgenstein, Philosophi-
cal Investigations, tr. G. E. M. Anscombe (New York: Macmillan, 1953), para.
471: “It often happens that we only become aware of the important facts, if we
suppress the question ‘why?’; and then in the course of our investigations these
facts lead us to an answer.” Cf. para. 109: “We must do away with all explana-
tion, and description must take its place.” On the overemphasis on psychological
explanations in American medicine, see Kawanishi, “Somatization of Asians.”
NOTES 221

59. Michael Ross and James Olson, “An Expectancy-Attribution Model of the
Effects of Placebos,” Psychological Review 88 (1981): 409–10. Cf. Carol Lowery,
Douglas Denney, and Michael Storms, “Insomnia: A Comparison of the Effects
of Pill Attributions and Nonpejorative Self-Attributions,” Cognitive Therapy
and Research 3 (1979): 161–64.
60. Kerr White, “The Ecology of Medical Care: Origins and Implications for
Population-Based Healthcare Research,” HSR: Health Services Research 32
(1997): 18. White cites a UK report from 1966.
61. Julie Suhr and John Gunstad, “Postconcussive Symptoms Report: The Relative
Influence of Head Injury and Depression,” Journal of Clinical and Experimen-
tal Neuropsychology 24 (2002): 981–93. On the similarity between symptoms
of concussion and those common in the general population, see Rodney
Vanderploeg and Heather Belanger, “Screening for a Remote History of Mild
Traumatic Brain Injury: When a Good Idea Is Bad,” Journal of Head Trauma
and Rehabilitation 28 (2013): 214.
62. Bernhard Gehr, Christel Weiss, and Franz Porzsolt, “The Fading of Reported
Effectiveness. A Meta-analysis of Randomised Controlled Trials,” BMC Medi-
cal Research Methodology 6 (2006); doi:10.1186/1471-2288-6-25.
63. Hunot, Horne, Leese et al., “A Cohort Study of Adherence to Antidepressants
in Primary Care”: 98.
64. Hunot, Horne, Leese et al., “A Cohort Study of Adherence to Antidepressants in
Primary Care”: 97. Cf. Richard Kravitz, Ronald Epstein, Mitchell Feldman et al.,
“Influence of Patients’ Requests for Direct-to-Consumer Advertised Antidepres-
sants,” JAMA 293 (2005): 1996: “Patients with minor symptoms of short dura-
tion who are prescribed antidepressants at initial presentation would be subject
to short-term adverse effects (e.g., sexual dysfunction) and potential hazards
(including suicidality) that would have to be weighed against marginal gains.”
65. Traolach Brugha, Paul Bebbington, Nicola Singleton et al., “Trends in Service
Use and Treatment for Mental Disorders in Adults Throughout Great Britain,”
British Journal of Psychiatry 185 (2004): 383.
66. Robert Kaplan, Theodore Gamiats, and Dominick Frosch, “Diagnostic and
Treatment Decisions in US Healthcare,” Journal of Health Psychology 9 (2004):
32. Cf. Jerome Hoffman and Richelle Cooper, “Overdiagnosis of Disease: A
Modern Epidemic,” Archives of Internal Medicine 172 (2012): 1123–24.
67. Steven Woolf and Russell Harris, “The Harms of Screening: New Attention to
an Old Concern,” JAMA 307 (2012): 565.
68. In Britain, leaflets advertising breast-cancer screening often don’t mention
harms, either. Fiona Godlee, “Less Medicine Is More,” BMJ 338 (2009): b2561.
Cf. Stewart Justman, “How Did the PSA System Arise?” Journal of the Royal
Society of Medicine 103 (2010): 309–12.
69. Howard Stoate, “Can Health Screening Damage Your Health?” Journal of the
Royal College of General Practitioners 39 (1989): 193–95.
70. Brett Thombs, James Coyne, Pim Cuijpers et al., “Rethinking Recommenda-
tions for Screening for Depression in Primary Care,” CMAJ 2011; doi: 10.1503/
cmaj.111035, p. 2: “Potential harms from routine screening for depression are
rarely made explicit.”
222 NOTES

71. Tanner Caverly, Brandon Combs, Christopher Moriates et al., “Too Much
Medicine Happens Too Often,” JAMA Internal Medicine 174 (2014): 8.
72. John Ioannidis and Joseph Lau, “Completeness of Safety Reporting in Rand-
omized Trials,” JAMA 285 (2001): 437–43.
73. Panagiotis Papanikolaou, Rachel Churchill, Kristian Wahlbeck et al., “Safety
Reporting in Randomized Trials of Mental Health Interventions,” American
Journal of Psychiatry 161 (2004): 1695.
74. Gordon Schiff and William Galanter, “Promoting More Conservative Prescrib-
ing,” JAMA 301 (2009): 866.
75. Moncrieff and Cohen, “Do Antidepressants Cure or Create Abnormal Brain
States?”
76. Joanna Moncrieff, The Myth of the Chemical Cure, p. 239.
77. Remarkably, though, drug trials with children aged four have been run. David Healy,
“The Latest Mania: Selling Bipolar Disorder,” PLoS Medicine 3 (4) (2006): e185.
78. Dr. Tanya Froehlich as cited in MedPage Today, Sept. 30, 2013.
79. See “Children and Psychiatric Drugs,” editorial in The Lancet 372 (2008): 1632.
On the slender benefits of antidepressants for children, see, e.g., Matthew
Miller, Sonja Swanson, Deborah Azrael et al., “Antidepressant Dose, Age, and
the Risk of Deliberate Self-harm,” JAMA Internal Medicine published online
April 28, 2014; doi:10.1001/jamainternmed.2014.1053. On the prescription
of psychoactive drugs to children in advance of safety data, see Mark Riddle,
Elizabeth Kastelic, and Emily Frosch, “Pediatric Psychopharmacology,” Journal
of Child Psychology and Psychiatry 42 (2001): 73–90.
80. On professional membership and special duties, see Stephen Toulmin, “How
Medicine Saved the Life of Ethics,” Perspectives in Biology and Medicine 25
(1982): 736–50.
81. Russell Barkley, Attention-Deficit Hyperactivity Disorder: A Handbook for Diag-
nosis and Treatment, Third Edition (New York: Guilford Press, 2006), p. 9.
82. On nearly 90 percent of ADHD cases in the mild to moderate range, see the
Centers for Disease Control and Prevention Morbidity and Mortality Weekly
Report, Nov. 12, 2010, pp. 1440–43. Official UK estimates of the prevalence of
“severe” ADHD in children appear consistent with the American numbers. See
Iain McClure, “Prescribing Methylphenidate for Moderate ADHD,” BMJ 347
(2013): f6216. On ADHD outcomes, see Rachel Klein, Salvatore Mannuzza,
María Ramos Olazagasti et al., “Clinical and Functional Outcomes of Child-
hood Attention-Deficit/Hyperactivity Disorder 33 Years Later,” Archives of
General Psychiatry 69 (2012): 1295–1303; also Russell Barkley, Mariellen
Fischer, Lori Smallish et al., “Young Adult Follow-Up of Hyperactive Children:
Antisocial Activities and Drug Use,” Journal of Child Psychology and Psychiatry
45 (2004): 195–211. Measured against long-term data, the results of ADHD-
drug trials running 10 or 21 days recede into triviality.
83. Klein, Mannuzza, Ramos Olazagasti et al., “Clinical and Functional Outcomes
of Childhood Attention-Deficit/Hyperactivity Disorder 33 Years Later.”
84. The one ADHD symptom given in DSM-III-R that seems genuinely concerning—
“often engages in physically dangerous activities without considering possible
NOTES 223

consequences . . . e.g., runs into the street without looking”—is ranked lowest in
discriminating power: number 14 of 14. Fidgeting is ranked highest.
85. On the preponderance on mild ADHD, see Rick Mayes, Catherine Bagwell,
and Jennifer Erkulwater, “ADHD and the Rise in Stimulant Use Among Chil-
dren,” Harvard Review of Psychiatry 16 (2008): 161.
86. Ilina Singh, “Beyond Polemics: Science and Ethics of ADHD,” Nature Reviews:
Neuroscience 9 (2008): 960.
87. “Expectancies can directly alter our subjective experience of internal states.
In addition, when we expect a particular outcome, we sometimes unwittingly
behave so as to produce that outcome.” Robert Michael, Maryanne Garry, and
Irving Kirsch, “Suggestion, Cognition, and Behavior,” Current Directions in
Psychological Science 2 (2012): 153.
88. Julie Suhr and John Gunstad, “‘Diagnosis Threat’: The Effect of Negative Expec-
tations on Cognitive Performance in Head Injury,” Journal of Clinical and
Experimental Neuropsychology 24 (2002): 448–57.
89. There is some evidence that children with ADHD overestimate their abilities.
See Julie Sarno Owens, Matthew Goldfine, Nicole Evangelista et al., “A Criti-
cal Review of Self-perception and the Positive Illusory Bias in Children with
ADHD,” Clinical Child and Family Psychology Review 10 (2007): 335–51. I am
unaware of evidence that children with ADHD have a higher-than-warranted
opinion of their ability to control themselves.
90. Chris Travell and John Visser, “‘ADHD Does Bad Stuff to You’: Young People’s
and Parents’ Experiences and Perceptions of Attention Deficit Hyperactivity
Disorder (ADHD),” Emotional and Behavioural Difficulties 11 (2006): 212. On
pill-taking and self-regulation, cf. Duncan Double, “The Limits of Psychiatry,”
BMJ 324 (2002): 900–4.
91. Allen Frances, Essentials of Psychiatric Diagnosis: Responding to the Challenge of
DSM-V (New York: Guilford Press, 2013), p. 9.
92. Frances, Saving Normal, p. 169.
93. Regier, Narrow, Kuhl et al., “Conceptual Development of DSM-V”: 648. The
chair of the DSM-V is the fourth author, David Kupfer.
94. Linda Baumann, Linda Cameron, Rich Zimmerman et al., “Illness Representa-
tions and Matching Labels with Symptoms,” Health Psychology 8 (1989): 453.
95. Baumann, Cameron, Zimmerman et al., “Illness Representations and Match-
ing Labels with Symptoms”: 467.
96. Laura Batstra and Allen Frances, “Diagnostic Inflation: Causes and a Suggested
Cure,” Journal of Nervous and Mental Disease 200 (2012): 474.
97. Horwitz and Wakefield, Loss of Sadness, p. 154.
98. Jerome Frank and Julia Frank, Persuasion as Healing: A Comparative Study of
Psychotherapy (Baltimore: Johns Hopkins University Press, 1991; orig. pub.
1961). Wittgenstein saw psychoanalysis as a mode of persuasion and called
attention to its power to mislead patients into thinking they have actually
made discoveries about themselves. L. Wittgenstein, Lectures & Conversa-
tions on Aesthetics, Psychology and Religious Belief, compiled from notes
taken by Yorick Smythies, Rush Rhees, and James Taylor; ed. Cyril Barrett
224 NOTES

(Berkeley: University of California Press, 1967), pp. 27, 51–52. The same is
arguably true of other psychotherapies.
99. Robert Hahn, “Expectations of Sickness: Concept and Evidence of the
Nocebo Phenomenon,” in How Expectancies Shape Experience, ed. Irving
Kirsch (Washington, DC: American Psychological Association, 1999),
p. 340.
100. Spitzer and Wakefield, “DSM-IV Diagnostic Criterion for Clinical Signifi-
cance”: 1857.
101. Sian Lewis, “A Search for Meaning: Making Sense of Depression,” Journal of
Mental Health 4 (1995): 369–82; unpaginated.
102. The possibility that a patient might actually believe a baseless diagnosis is
strangely missing from psychiatric discussions of the risks of overdiagnosis.
Thus, among the “dangers of diagnostic inflation” Allen Frances and coauthor
cite treatment with unnecessary, possibly dangerous drugs; the “inevitable
stigma” that attaches to someone diagnosed with a mental disorder; and the
shame and ridicule to which psychiatry exposes itself by its own folly. See
Batstra and Frances, “Diagnostic Inflation”: 476. Ignored is the damage done
by implanting false ideas in the patient’s mind.
103. Derek Summerfield, “Proposals for Massive Expansion of Psychological Ther-
apies Would Be Counterproductive Across Society,” British Journal of Psychia-
try 192 (2008): 327.
104. James Pennebaker, The Psychology of Physical Symptoms (New York: Springer-
Verlag, 1982), p. 38.
105. Robert Ferrari, “The Biopsychosocial Model—A Tool for Rheumatologists,”
Best Practice and Research Clinical Rheumatology 14 (2000): 790.
106. In the happy phrase of Robert Hahn, such syndromes might be thought of as
communicable diseases. See Hahn, Sickness and Healing: An Anthropological
Perspective (New Haven: Yale University Press, 1995), p. 89.
107. See, e.g., David Goldberg, Martin Privett, Bedirhan Ustun et al., “The Effects
of Detection and Treatment on the Outcome of Major Depression in Primary
Care: A Naturalistic Study in 15 Cities,” British Journal of General Practice 48
(1998): 1840–44.
108. Thombs, Coyne, Cuijpers et al., “Rethinking Recommendations for Screening
for Depression in Primary Care”: 3.
109. On the risks of diagnosis and treatment of depression, see, e.g., Dowrick,
Beyond Depression, pp. 85–86. On drugs that work some fraction of the
time, see Nicholas Christakis, “Does This Work for You?” BMJ 337 (2008):
1025.
110. “Medical practice expropriates the potential of people to deal with their
human condition in an autonomous way and becomes the source of a new
kind of un-health.” Ivan Illich, “Medical Nemesis,” Journal of Epidemiology
and Community Health 57 (2003): 919. Originally published in 1974.
111. Derek Summerfield, “The Invention of Post-Traumatic Stress Disorder and
the Social Usefulness of a Psychiatric Category,” BMJ 322 (2001): 95.
112. Robert Spitzer, Michael First, and Jerome Wakefield, “Saving PTSD from Itself
in DSM-V,” Journal of Anxiety Disorders 21 (2007): 233–41.
NOTES 225

113. Paul McHugh and Glenn Treisman, “PTSD: A Problematic Diagnostic Cat-
egory,” Journal of Anxiety Disorders 21 (2007): 219.
114. On unrecognized risk, cf. Lawrence Tierney, “Iatrogenic Illness,” Western
Journal of Medicine 151 (1989): 538, 540.
115. Raine Sihvonen, Mika Paavola, Antti Malmivaara et al., “Arthroscopic Partial
Meniscectomy versus Sham Surgery for a Degenerative Miniscal Tear,” New
England Journal of Medicine 369 (2013): 2517.
116. F. Benedetti, M. Lanotte, L. Lopiano et al., “When Words Are Painful: Unrave-
ling the Mechanisms of the Nocebo Effect,” Neuroscience 147 (2007): 269. Cf.
Fabrizio Benedetti, Placebo Effects: Understanding the Mechanisms in Health
and Disease (Oxford: Oxford University Press, 2009), p. 83: “Negative warn-
ings sent out by the mass media may have an important impact on the per-
ceived symptoms of many people.”
117. Eugene Epstein, Manfred Wiesner, and Lothar Duda, “DSM and the
Diagnosis-MacGuffin: Implications for the Self and Society,” Australian and
New Zealand Journal of Family Therapy 34 (2013): 156–57.
118. See Spitzer’s foreword to Horwitz and Wakefield, Loss of Sadness, p. viii. The
first principle of Hahn’s theory of medicine holds, in part, that “conceptions,
theories, and experiences of sickness are elements of socially transmitted cul-
tural systems” (Sickness and Healing, p. 267), implying that our very experi-
ence of illness is colored by the messages we receive about it.
119. Certainly those who receive misleading diagnoses of cancer and then con-
sider themselves survivors have come to believe them. “Overdiagnosis gives
the screenee a false diagnosis of cancer for life.” William Black, “Overdiagno-
sis: An Underrecognized Cause of Confusion and Harm in Cancer Screen-
ing,” Journal of the National Cancer Institute 92 (2000): 1281.
120. David Healy, “Mandel Cohen and Origins of the Diagnostic and Statistical
Manual of Mental Disorders, Third Edition: DSM-III,” History of Psychiatry
13 (2002): 219.
121. DSM-III-R 314.00.
122. Howard Brody and David Waters, “Diagnosis Is Treatment,” Journal of Fam-
ily Practice 10 (1980): 447. Cf. Howard Spiro, The Power of Hope: A Doctor’s
Perspective (New Haven: Yale University Press, 1998), p. 45.
123. Herbert Spiegel and David Spiegel, Trance and Treatment: Clinical Uses of
Hypnosis (Arlington: American Psychiatric Publishing, 2004), p. 11.
124. In this connection cf. a patient quoted in David Karp, Is It Me or My Meds?
Living with Antidepressants (Cambridge, MA: Harvard University Press,
2006), p. 85: “The medication only works . . . because of the doctor who is giv-
ing it to me and the way we work together.” Elsewhere the same patient says,
“I don’t know, I think that it’s important to think about the way society . . . is
constructing these diseases” (p. 79).
125. The literature is vast, but see Arthur Shapiro and Elaine Shapiro, The Powerful
Placebo: From Ancient Priest to Modern Physician (Baltimore: Johns Hopkins
University Press, 1997).
126. K. B. Thomas, “General Practice Consultations: Is There Any Point in Being
Positive?” BMJ 294 (1987): 1200–2.
226 NOTES

127. Note, however, that patients can be harmed even by being told nothing is
wrong with them. See Ray Fitzpatrick, “Telling Patients There Is Nothing
Wrong,” BMJ 313 (1996): 311–12.
128. Pennebaker, Psychology of Physical Symptoms, pp. 153–54.
129. Jessica Bury and J. Michael Bostwick, “Iatrogenic Delusional Parasitosis:
A Case of Physician-Patient Folie a Deux,” General Hospital Psychiatry 32
(2010): 212. On the case of a patient who so invests in the diagnosis of lupus
that she resists giving it up even though it’s false, see Lisa Rosenbaum, “Living
Unlabeled—Diagnosis and Disorder,” New England Journal of Medicine 359
(2008): 1652.
130. Robert Croyle and John Jemmott III, “Psychological Reactions to Risk Factor
Testing” in Mental Representation in Health and Illness, eds. J. A. Skelton and
Robert Croyle (New York: Springer-Verlag, 1991), p. 88.
131. Joan Bloom and Susan Monterossa, “Hypertension Labeling and Sense of
Well-Being,” American Journal of Public Health 71 (1981): 1228–32.
132. Gerald Rosen, Robert Spitzer, and Paul McHugh, “Problems with the Post-
Traumatic Stress Disorder Diagnosis and Its Future in DSM-V,” British Journal
of Psychiatry 192 (2008): 4.
133. Benedetti, Lanotte, Lopiano et al., “When Words Are Painful”: 269.
134. Wang and Zollman, “Postconcussion Syndrome”: 115.
135. Luana Colloca, “The Influence of the Nocebo Effect in Clinical Trials,” Open
Access Journal of Clinical Trials 4 (2012): 65.
136. “All practitioners who evaluate and care for children with ADHD have
encountered children given that label who do not in fact have ADHD.” Ruth
Stein, “Measurement of ADHD Outcomes: Implications for the Future,” Jour-
nal of Pediatric Psychology 32 (2007): 728.
137. “People, including children, are agents, they act, as the philosophers say, under
descriptions. The courses of action they choose, and indeed their ways of
being, are by no means independent of the available descriptions under which
they may act . . . We are especially concerned with classifications that, when
known by people or by those around them, and put to work in institutions,
change the ways in which individuals experience themselves—and may even
lead people to evolve their feelings and behavior in part because they are so
classified.” Ian Hacking, The Social Construction of What? (Cambridge: Har-
vard University Press, 1999), pp. 103–4. The context is a discussion of ADHD.
138. Healy, Pharmageddon, p. 172.
139. D. L. Rosenhan, “On Being Sane in Insane Places,” Science 179 (1973): 254.
140. David LeCouteur, Jenny Doust, Helen Creasey et al., “Political Drive to Screen
for Pre-Dementia: Not Evidence Based and Ignores the Harms of Diagnosis,”
BMJ 347 (2013): f5125; doi 10.1136/bmj.f5125.
141. Brian Draper, Carmelle Peisah, John Snowdon et al., “Early Dementia Diag-
nosis and the Risk of Suicide and Euthansia,” Alzheimer’s and Dementia 6
(2010): 75–82. How can Smith express his anger and confusion over such an
act of diagnostic hubris without seeming demented, or reject it without seem-
ing to be “in denial”?
142. See, e.g., Karp, Is It Me or My Meds?
NOTES 227

143. Howard Leventhal and Michael Diefenbach, “The Active Side of Illness Cog-
nition” in Mental Representation in Health and Illness, eds. Skelton and Croyle,
p. 260.
144. Note, however, the fleeting comment in Frances, Saving Normal, p. 109: “If
you are told you are sick, you feel and act sick, and others treat you as if you
are sick.” Cf. Moncrieff, The Myth of the Chemical Cure, p. 221: Children diag-
nosed with ADHD “may absorb the unhelpful message that they cannot con-
trol their own behaviour without the use of drugs.”
145. Frances, Saving Normal, p. 144.
146. Peter Parry, “Biologism in Psychiatry: A Young Man’s Experience of Being
Diagnosed with ‘Pediatric Bipolar Disorder,’” Journal of Clinical Medicine 3
(2014): 337–38.
147. Parry, “Biologism in Psychiatry”: 341.
148. On the last point, see Temerlin, “Suggestion Effects in Psychiatric Diagnosis.”
149. In actuality, “validity has been sacrificed to achieve reliability.” Nancy
Andreasen, “DSM and the Death of Phenomenology in America: An Exam-
ple of Unintended Consequences,” Schizophrenia Bulletin 33 (2007): 111. The
author was a key player in the making of DSM-III.
150. Richard Smith, “In Search of Non-Disease,” BMJ 324 (2002): 884.
151. Karp, Is It Me or My Meds? p. 89.
152. Michael Thase, Harald Murck, and Anke Post, “Clinical Relevance of Dis-
turbances of Sleep and Vigilance in Major Depressive Disorder: A Review,”
Primary Care Companion to the Journal of Clinical Psychiatry 12 (2010):
PCC.08m00676.
153. Bruce Rollman, Marian Block, and Herbert Schulberg, “Symptoms of Major
Depression and Tricyclic Side Effects in Primary Care Patients,” Journal of
General Internal Medicine 12 (1997): 284–91.
154. Cf. Kelly McKinney and Brian Greenfield, “Self-compliance at ‘Prozac Cam-
pus,’” Anthropology and Medicine 17 (2010): 181. See also Kaitlin Bell Barnett,
Dosed: The Medication Generation Grows Up (Boston: Beacon, 2012), p. 66:
“At the time, she and her parents assumed the drowsiness was a residual
symptom of depression; it wasn’t until many years later that they realized that
the medication [Prozac] might have caused or exacerbated her sleepiness.”
155. Jeffrey Stepnisky, “The Biomedical Self: Hermeneutic Considerations,” Social
Theory and Health 5 (2007): 201.
156. Frederik Feys, Geertruida Bekkering, Kavita Singh et al., “Do Randomized
Clinical Trials with Inadequate Blinding Report Enhanced Placebo Effects
for Intervention Groups and Nocebo Effects for Placebo Groups?” Systematic
Reviews 3 (2014): 54.
157. The MTA Cooperative Group, “A 14-Month Randomized Clinical Trial of
Treatment Strategies for Attention-Deficit/Hyperactivity Disorder,” Archives
of General Psychiatry 56 (1999): 1073–86.
158. See the discussion in Chapter 2.
159. Robert Croyle and Gerald Sande, “Denial and Confirmatory Search: Paradox-
ical Consequences of Medical Diagnosis,” Journal of Applied Social Psychology
18 (1988): 473–90.
228 NOTES

160. Ronald Kessler, Patricia Berglund, Olga Demler et al., “Lifetime Preva-
lence and Age-of-Onset Distributions of DSM-IV Disorders in the National
Comorbidity Survey Replication,” Archives of General Psychiatry 62 (2005):
593–602.
161. Frances, Essentials of Psychiatric Diagnosis, p. 9. Cf. John Mirowsky and Cath-
erine Ross, “Psychiatric Diagnosis as Reified Measurement,” Journal of Health
and Social Behavior 30 (1989): 1–25. “Major Depression” and similar catego-
ries “are linguistic pigeonholes into which some people are placed and other
are not” (22).
162. Cf. Bell Barnett, Dosed, p. 105.
163. Montaigne, “On the Resemblance of Children to Their Fathers,” Complete
Essays, tr. M. A. Screech (London: Penguin, 2003), p. 860.
164. Toulmin, Cosmopolis.
165. On the artificiality of clinical trials, see Russell Glasgow, Thomas Vogt, and
Shawn Boles, “Evaluating the Public Health Impact of Health Promotion
Interventions: The RE-AIM Framework,” American Journal of Public Health
89 (1999): 1322–27.
166. Cf. Horwitz, Creating Mental Illness, pp. 192–93.
167. Montaigne, “On the Power of the Imagination,” p. 109. On latter-day miracle
cures, see, e.g., Sami Timimi, Pathological Child Psychiatry and the Medicali-
zation of Childhood (Hove: Brunner-Routledge, 2002), p. 85: “Some years
ago I attended a conference organized by a pro-Ritalin® and pro-ADHD
group . . . I heard about Ritalin® and other psychostimulants spoken of [sic]
in terms of miracles and complete transformations . . . Non-believers were
spoken about in a derogatory manner as if their concerns amounted to
blasphemy.”
168. Montaigne, “On the Power of the Imagination,” p. 117. It has been dem-
onstrated that subjects who see a drug being administered tend to enjoy a
stronger effect that those who receive it without knowing.
169. Montaigne, “An Apology for Raymond Sebond,” p. 547. Hamlet, in his solilo-
quy at the end of Act II, exclaims on the power of the player’s acting—“his
whole function suiting / With forms to his conceit,” that is, his very body
expressing his imagination.
170. See on this Raymond La Charité, “The Relationship of Judgment and Experi-
ence in the ‘Essais’ of Montaigne,” Studies in Philology 67 (1970): 31–40.
171. Montaigne, “On the Education of Children,” p. 185: “We are not bringing up
a soul; we are not bringing up a body: we are bringing up a man. We must not
split him into two.”
172. Montaigne, “On Experience,” p. 1246.
173. Montaigne, “Apology for Raymond Sebond,” pp. 547–49. On the undermin-
ing of people’s confidence in their own health as a result of medicalization, see
Marcel Verweij, “Medicalization as a Moral Problem for Preventive Medicine,”
Bioethics 13 (1999): 89–113. Cf. Joseph Dumit, Drugs for Life: How Phar-
maceutical Companies Define Our Health (Durham: Duke University Press,
2012), p. 2: “The more we know, the more we fear.” The principle that health is
NOTES 229

unconscious of itself became literally proverbial; according to Poor Richard,


“We are not so sensible of the greatest Health as of the least Sickness.” See
Benjamin Franklin, Writings (New York: Library of America, 1978), p. 1241.
174. Tierney, “Iatrogenic Illness”: 537.
175. Nicola Mondaini, Paolo Gontero, Gianluca Giubilei et al., “Finasteride 5 mg
and Sexual Side Effects: How Many of These Are Related to a Nocebo Phe-
nomenon?” Journal of Sexual Medicine 4 (2007): 1711.
176. Toulmin, “How Medicine Saved the Life of Ethics”: 741–42. I find it sug-
gestive that Toulmin’s teacher Wittgenstein, who changed philosophy, and
Chekhov and Joyce, who changed literature, all had an eye for particulars
and an attraction to medicine: Chekhov being a doctor, Joyce at one time
intending to study medicine, and Wittgenstein haunted with the wish
to abandon philosophy in favor of medicine. For an eloquent defense of
the particularity of cases, see George Eliot, The Mill on the Floss (Boston:
Houghton Mifflin, 1961), p. 435.
177. Winfried Schleiner, Medical Ethics in the Renaissance (Washington, D.C.:
Georgetown University Press, 1995), p. 20.
178. Peter Ditto and Robert Croyle, “Understanding the Impact of Risk Factor Test
Results: Insights from a Basic Research Program,” in Psychosocial Effects of
Screening for Disease Prevention and Detection, ed. Robert Croyle (Oxford:
Oxford University Press, 1995), pp. 144–81.
179. A. Sandler and J. Bodfish, “Open-Label Use of Placebos in Treatment of
ADHD: A Pilot Study,” Child: Care, Health and Development 34 (2008): 104–
10. Cf. Henrikje Klasen, “A Name, What’s in a Name? The Medicalization of
Hyperactivity, Revisited,” Harvard Review of Psychiatry 7 (2000): 334.
180. Sara Garfield, Felicity Smith, and Sally-Anne Francis, “The Paradoxical Role
of Antidepressant Medication—Returning to Normal Functioning While
Losing the Sense of Being Normal,” Journal of Mental Health 12 (2003): 534.
Such disclaimers are common in the literature.
181. John Helzer and Lee Robins, “The Diagnostic Interview Schedule: Its Devel-
opment, Evolution, and Use,” Social Psychiatry and Psychiatric Epidemiology
23 (1988): 15.
182. Toulmin, “How Medicine Saved the Life of Ethics”: 742.
183. Paul Chodoff, “The Medicalization of the Human Condition,” Psychiatric Ser-
vices 53 (2002): 627.
184. Leo Tolstoy, War and Peace, tr. Louise and Aylmer Maude (Oxford: Oxford
University Press, 1991), pp. 631, 702.
185. Tolstoy, “A Confession” in The Portable Tolstoy, ed. John Bayley, tr. Aylmer
Maude (New York: Viking, 1978), p. 679.
186. Ray Monk, Ludwig Wittgenstein: The Duty of Genius (New York: Penguin,
1990), p. 173.
187. Odyssey 4.788.
188. Glin Bennett, “Shakespeare and Post-Traumatic Stress Disorder,” British Jour-
nal of Psychiatry 198 (2011): 255.
189. Watters, Crazy Like Us, p. 115.
230 NOTES

Chapter 2

1. Ludwig Wittgenstein, Philosophical Investigations, third edition, tr. G. E. M.


Anscombe (New York: Macmillan, n.d.), pp. 41, 34.
2. Richard Shusterman, “William James, Somatic Introspection, and Care of the
Self,” Philosophical Forum 36 (2005): 420.
3. K. B. Thomas, “General Practice Consultations: Is There Any Point in Being
Positive?” BMJ 294 (1987): 1200–1202. Cf. Anthony Dixon, “‘There’s a Lot of
It About’: Clinical Strategies in Family Practice,” Journal of the Royal College
of General Practitioners 36 (1986): 469: “In the primary care setting the preva-
lence of serious disease in the population is low, while the prevalence of symp-
tomatic discomfort is high.”
4. Winfried Rief, Yvonne Nestoriuc, Anna von Lilienfeld-Toal et al., “Differences in
Adverse Effect Reporting in Placebo Groups in SSRI and Tricyclic Antidepressant
Trials: Systematic Review and Meta-Analysis,” Drug Safety 32 (2009): 1049.
5. Marcus Reidenberg and David Lowenthal, “Adverse Nondrug Reactions,” New
England Journal of Medicine 279 (1968): 678–79. On the ubiquity of symptoms
even among the healthy, see also Irving Kenneth Zola, Socio-Medical Inquiries:
Recollections, Reflections, and Reconsiderations (Philadelphia: Temple University
Press, 1983), ch. 10.
6. Elaine Showalter, Hystories: Hysterical Epidemics and Modern Media (New
York: Columbia University Press, 1997), p. 119.
7. Kurt Kroenke, Robert Spitzer, Janet Williams et al., “Physical Symptoms in Pri-
mary Care: Predictors of Psychiatric Disorders and Functional Impairment,”
Archives of Family Medicine 3 (1994): 776.
8. Allan Horwitz and Jerome Wakefield, The Loss of Sadness: How Psychiatry
Transformed Normal Sorrow into Depressive Disorder (Oxford: Oxford Univer-
sity Press, 2007), p. 128.
9. Larry Goldman, Nancy Nielsen, and Hunter Champion, “Awareness, Diagnosis, and
Treatment of Depression,” Journal of General Internal Medicine 14 (1999): 569.
10. This is all the more shocking in that one of the original members of the DSM-
III Task Force, Robert Woodruff, committed suicide.
11. Joan Bloom and Susan Monterossa, “Hypertension Labeling and Sense of Well-
Being,” American Journal of Public Health 71 (1981): 1228.
12. See, e.g., R. Powell, R. Dolan, and S. Wessely, “Attributions and Self-Esteem
in Depression and Chronic Fatigue Syndromes,” Journal of Psychosomatic
Research 34 (1990): 665–73.
13. Nortin Hadler, “Fibromyalgia, Chronic Fatigue, and Other Iatrogenic Diagnos-
tic Algorithms,” Postgraduate Medicine 102 (1997): 165.
14. Gary Holmes, Jonathan Kaplan, Nelson Gantz et al., “Chronic Fatigue
Syndrome: A Working Case Definition,” Annals of Internal Medicine 108
(1988): 388.
15. Edward Shorter, Doctors and Their Patients: A Social History (New Brunswick:
Transaction, 1991), p. 243.
16. Amy Harmon, “Young, Assured and Playing Pharmacist to Friends,” New York
Times Nov. 16, 2005: “To some extent, the embrace by young adults of better
NOTES 231

living through chemistry is driven by familiarity. Unlike previous generations,


they have for many years been taking drugs prescribed by doctors for depres-
sion, anxiety or attention deficit disorder.” Cf. Kelly McKinney and Brian
Greenfield, “Self-compliance at ‘Prozac Campus,’” Anthropology and Medicine
17 (2010): 173–85.
17. Grant Iverson, Brian Brooks, V. Lynn Ashton et al., “Interview Versus Ques-
tionnaire Symptom Reporting in People with the Postconcussion Syndrome,”
Journal of Head Trauma Rehabilitation 25 (2010): 23.
18. W. Gouvier, M. Uddo-Crane, and L. Brown, “Base Rates of Post-Concussional
Symptoms,” Archives of Clinical Neuropsychology 3 (1988): 273–78.
19. Allyson Harrison, Melanie Edwards, and Kevin Parker, “Identifying Students
Faking ADHD: Preliminary Findings and Strategies for Detection,” Archives of
Clinical Neuropsychology 22 (2007): 579.
20. Kenneth Hyams, “Developing Case Definitions for Symptom-based Condi-
tions: The Problem of Specificity,” Epidemiologic Reviews 20 (1998): 148–56.
21. Grant Iverson, “Misdiagnosis of the Persistent Postconcussion Syndrome in
Patients with Depression,” Archives of Clinical Neuropsychology 21 (2006):
304.
22. Ben Goldacre, Bad Pharma: How Drug Companies Mislead Doctors and Harm
the Public (New York: Faber and Faber, 2012), p. 155.
23. Ian Thompson, Phyllis Goodman, Catherine Tangen et al., “The Influence of
Finasteride on the Development of Prostate Cancer,” New England Journal of
Medicine 349 (2003): 215–24.
24. See “Risk-Benefits of 5ARIs for PRCA Prevention” (2013), available at www.
fda.gov.
25. Virginia Moyer et al., “Screening for Cognitive Impairment in Older Adults:
U.S. Preventive Services Task Force Recommendation Statement,” Annals of
Internal Medicine, published online March 25, 2014.
26. Barron Lerner, The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure
in Twentieth-Century America (Oxford: Oxford University Press, 2001), p.
216.
27. Karen Glanz and Mary Beth Gilboy, “Psychosocial Impact of Cholesterol
Screening and Management,” in Psychosocial Effects of Screening for Disease
Prevention and Detection, ed. Robert Croyle (Oxford: Oxford University Press,
1995), p. 39; Dudley Gentles, Patricia Metcalf, Lorna Dyall et al., “Serum Lipid
Levels for a Multicultural Population in Auckland, New Zealand: Results from
the Diabetes Heart and Health Survey (DHAH): 2002–2003,” New Zealand
Medical Journal 120 (2007): unpaginated.
28. Michael Klinkman, James Coyne, Susan Gallo et al., “False Positives, False Neg-
atives, and the Validity of the Diagnosis of Major Depression in Primary Care,”
Archives of Family Medicine 7 (1998): 459.
29. Cf. Fiona Godlee, “What Is Health?” BMJ 343 (2011): d4817.
30. Shorter, Doctors and Their Patients, p. 244. By contrast, in How Everyone
Became Depressed: The Rise and Fall of the Nervous Breakdown (Oxford:
Oxford University Press, 2013), Shorter argues that a slightly inflamed
version of the same group of symptoms constitutes a pressing medical
232 NOTES

problem of great magnitude—a problem that defies the reductive diagnosis,


depression.
31. K. B. Thomas, “General Practice Consultations: Is There Any Point in Being
Positive?”
32. Ethan Watters, Crazy Like Us: The Globalization of the American Psyche (New
York: Free Press, 2010), p. 225.
33. Stephen Faraone, Joseph Biederman, Thomas Spencer et al., “Diagnosing Adult
Attention Deficit Hyperactivity Disorder: Are Late Onset and Subthreshold
Diagnoses Valid?” American Journal of Psychiatry 163 (2006): 1720–29. On
ADHD as a catch-all diagnosis, see James Trilling, “My Father and the Weak-
Eyed Devils,” American Scholar, Spring 1999, p. 20: “The symptoms [of ADD;
sic] are almost as diverse as the demands of life itself.” James Trilling insists on
the reality of ADD, however.
34. R. Ferrari and H. Schrader, “The Late Whiplash Syndrome: A Biopsychosocial
Approach,” Journal of Neurology, Neurosurgery, and Psychiatry 70 (2001): 724.
On whiplash and similar ills, see Francisco Javier Aceves-Avila, Robert Ferrari,
and Cesar Ramos-Remus, “New Insight into Culture Driven Disorders,” Best
Practice & Research Clinical Rheumatology 18 (2004): 155–71.
35. Allyson Harrison, Melanie Edwards, and Kevin Parker, “Identifying Students
Faking ADHD: Preliminary Findings and Strategies for Detection”: 579.
36. Fabrizio Benedetti, “How the Doctor’s Words Affect the Patient’s Brain,” Evalu-
ation and the Health Professions 25 (2002): 369–86.
37. Horwitz and Wakefield, Loss of Sadness, p. 7.
38. See, e.g., Eliot Freidson, Profession of Medicine: A Study of the Sociology of
Applied Knowledge (New York: Dodd, Mead, 1970).
39. Samuel Sessions and Allan Detsky, “The ‘Shadow Government’ in Health Care,”
JAMA 304 (2010): 2743.
40. Andrew Lakoff, “The Right Patients for the Drug: Managing the Placebo Effect
in Antidepressant Trials,” BioSocieties 2 (2007): 60.
41. David LeCouteur, Jenny Doust, Helen Creasey et al., “Political Drive to Screen
for Pre-Dementia: Not Evidence Based and Ignores the Harms of Diagnosis,”
BMJ 347 (2013): f5125; doi 10.1136/bmj.f5125.
42. Virginia Barbour, Jocalyn Clark, Larry Peiperl, et al., “False Hopes,
Unwarranted Fears: The Trouble with Medical News Stories,” PLoS Medicine 5
(2008): e118.
43. Yet according to DSM-III-R, “a frequent criticism of the DSM-III criteria for
[Antisocial] disorder is the failure to include the concept of absence of guilt or
remorse” (p. 429).
44. Allan Frances, Saving Normal: An Insider’s Revolt against Out-of-Control Psy-
chiatric Diagnosis, DSM-V, Big Pharma, and the Medicalization of Ordinary Life
(New York: William Morrow, 2013), p. 74.
45. Isaiah Berlin, Concepts and Categories (Harmondsworth, Middlesex: Penguin,
1981), p. 188.
46. John Feighner, Eli Robins, and Samuel Guze, “Diagnostic Criteria for Use in
Psychiatric Research,” Archives of General Psychiatry 26 (1972): 62.
NOTES 233

47. On the “utopian vision” guiding the framers of DSM-III, and on the document
itself as a product of “collective fantasy,” see Alix Spiegel, “The Dictionary of
Disorder: How One Man Revolutionized Psychiatry,” New Yorker, Jan. 3, 2005.
48. The bereavement exclusion has been deleted from the DSM. In the equine uto-
pia of Gulliver’s Travels the death of a spouse is not mourned. “I remember my
master having made an appointment with a friend and his family to come to his
house upon some affair of importance; on the day fixed, the mistress and her
two children came very late . . . Her excuse for not coming sooner was that her
husband dying late in the morning, she was a good while consulting her serv-
ants about a convenient place where his body should be laid; and I observed she
behaved herself at our house, as cheerfully as the rest.”
49. On the utopianism of the medicalization movement, see Arthur Barsky, Wor-
ried Sick: Our Troubled Quest for Wellness (Boston: Little, Brown, 1988); Paul
Chodoff, “The Medicalization of the Human Condition,” Psychiatric Services 53
(2002): 627–28.
50. K. L. White, T. F. Williams, and B. G. Greenberg, “The Ecology of Medical
Care,” New England Journal of Medicine 265 (1961): 885–92.
51. Wolfgang Hiller, Winfried Rief, and Elmar Brähler, “Somatization in the Pop-
ulation: From Mild Bodily Misperceptions to Disabling Symptoms,” Social
Psychiatry and Psychiatric Epidemiology 41 (2006): 704.
52. Natalie McGauran, Beate Wieseler, Julia Kreis et al., “Reporting Bias in Medical
Research—A Narrative Review,” Trials 11 (2010): 37.
53. Florence Bourgeois, Srinivas Murthy, and Kenneth Mandl, “Outcome Report-
ing Among Drug Trials Registered in ClinicalTrials.gov,” Annals of Internal
Medicine 153 (2010): 158–66; Joel Lexchin, Lisa Bero, Benjamin Djulbego-
vic et al., “Pharmaceutical Industry Sponsorship and Research Outcome and
Quality: Systematic Review,” BMJ 326 (2003): 1167–70. However, analogous
problems of bias compounded by inattention to harms plague the literature
on social interventions; see Joan McCord, “Cures That Harm: Unanticipated
Outcomes of Crime Prevention Programs,” Annals of the American Academy of
Political and Social Science 587 (May 2003): 16–17.
54. Irving Kirsch, The Emperor’s New Drugs: Exploding the Antidepressant Myth
(New York: Basic, 2010). On suppressed studies of paroxetine, see p. 40.
55. See December 1, 2010 Briefing Document prepared for the FDA’s Oncologic
Drugs Advisory Committee (ODAC).
56. See, again, “Risk-Benefits of 5ARIs for PRCA Prevention” (2013), available at
www.fda.gov.
57. Peter Conrad, The Medicalization of Society: On the Transformation of Human
Conditions into Treatable Disorders (Baltimore: Johns Hopkins University
Press, 2007), p. 148.
58. Frances, Saving Normal, p. 92.
59. John Ioannidis and Joseph Lau, “Completeness of Safety Reporting in Rand-
omized Trials,” JAMA 285 (2001): 437. Cf. Panagiotis Papanikolaou, Rachel
Churchill, Kristian Wahlbeck et al., “Safety Reporting in Randomized Trials of
Mental Health Interventions,” American Journal of Psychiatry 161 (2004): 1695.
234 NOTES

60. Mark Riddle, Elizabeth Kastelic, and Emily Frosch, “Pediatric Psychopharma-
cology,” Journal of Child Psychology and Psychiatry 42 (2001): 73. “Efficacy”
here refers to a drug’s performance in a controlled setting, “effectiveness” to its
performance in clinical practice.
61. Amanda Drews, David Antonuccio, and Irving Kirsch, “A Meta-Analysis of
Randomized Placebo Controlled Trials of Antidepressant Medication in
Depressed Children: Do the Benefits Justify the Risks?” Journal of Mind-Body
Regulation 1 (2011): 85–95.
62. Richard Kravitz, Ronald Epstein, Mitchell Feldman et al., “Influence of Patients’
Requests for Direct-to-Consumer Advertised Antidepressants,” JAMA 293
(2005): 2000.
63. Klinkman et al., “False Positives, False Negatives, and the Validity of the Diag-
nosis of Major Depression in Primary Care”: 454. Cf. Ramin Mojtabai and
Mark Olfson, “Proportion of Antidepressants Prescribed without a Psychiatric
Diagnosis Is Growing,” Health Affairs 30 (2011): 1434–42.
64. David Karp, Is It Me or My Meds? Living with Antidepressants (Cambridge, MA:
Harvard University Press, 2006), pp. 75–76.
65. Kirsch, The Emperor’s New Drugs, p. 44; on side effects of SSRIs vs. placebo, see
p. 128.
66. S. Rose, J. Bisson, R. Churchill et al., “Psychological Debriefing for Preventing
Post Traumatic Stress Disorder (PTSD),” Cochrane Library 2009, Issue 1: 10.
67. Ferguson, “SSRI Antidepressant Medications: Adverse Effects and Tolerabil-
ity”: 24.
68. Arthur Barksy, Ralph Saintfort, Malcolm Rogers et al., “Nonspecific Medica-
tion Side Effects,” JAMA 287 (2002): 625. In a review of the treatment outcomes
of 1,131 depressed patients, only 46 percent completed a minimum course of
antidepressant medication, defined as two months or more. See Kimberley
Hepner, Melissa Rowe, Kathryn Rost et al., “The Outcome of Adherence to
Practice Guidelines on Depression Outcomes,” Annals of Internal Medicine 147
(2007): 320–29.
69. John Goethe, Stephen Woolley, Alex Cardoni et al., “Selective Serotonin Reup-
take Inhibitor Discontinuation: Side Effects and Other Factors That Influence
Medication Adherence,” Journal of Clinical Psychopharmacology 27 (2007):
451–58.
70. David Healy, “The Dilemmas Posed by New and Fashionable Treatments,”
Advances in Psychiatric Treatment 7 (2001): 323.
71. Elias Khawam, Georgia Laurencic, and Donald Malone, “Side Effects of Anti-
depressants: An Overview,” Cleveland Clinic Journal of Medicine 73 (2006): 351;
see also Christopher Ron Cantrell, Michael Eaddy, Manan Shah et al., “Meth-
ods for Evaluating Patient Adherence to Antidepressant Therapy,” Medical Care
44 (2006): 300–3.
72. Kirsch, The Emperor’s New Drugs. Cf. Montaigne, “On Experience,” Complete
Essays, tr. M. A. Screech (London: Penguin, 2003), p. 1233: “Since we must risk
being wrong, let us risk what gives us pleasure. The world does the reverse,
thinking that nothing does you good unless it hurts.”
NOTES 235

73. Randolph Evans and Malcolm Rogers, “Headaches and the Nocebo Effect,”
Headache 43 (2003): 1114.
74. Ferguson, “SSRI Antidepressant Medications: Adverse Effects and Tolerabil-
ity”: 22; cf. W. F. Boyer and John Feighner, “Side-Effects of the Selective Sero-
tonin Re-uptake Inhibitors,” in Selective Serotonin Re-uptake Inhibitors: The
Clinical Use of Citalopram, Fluoxetine, Fluvoxamine, Paroxetine, and Sertraline
(New York: John Wiley & Sons, 1991), p. 146: “Most of the published compara-
tive studies [of SSRIs] have been against amitriptyline and imipramine, which
may have biased the side-effect outcome in favour of the SSRIs.”
75. Ferguson, “SSRI Antidepressant Medications.”
76. Khawam, Laurencic, Malone, “Side Effects of Antidepressants”: 353.
77. Frances, Saving Normal, pp. xiv, 169.
78. Allen Frances, “The New Crisis of Confidence in Psychiatric Diagnosis,”
Annals of Internal Medicine online, May 17, 2013; doi:10.7326/0003-4819-159-
3-201308060-00655; cf. Saving Normal, p. 174.
79. Steven Hyman, “The Diagnosis of Mental Disorders: The Problem of Reifica-
tion,” Annual Review of Clinical Psychology 6 (2010): 171.
80. American Urological Association, Prostate-Specific Antigen Best Practice State-
ment: 2009 Update, p. 9.
81. Marc Theoret, Yang-Min Ning, Jenny Zhang et al., “The Risks and Benefits of
5α-Reductase Inhibitors for Prostate-Cancer Prevention,” New England Journal
of Medicine 365 (2011): 99.
82. Ian Thompson, Phyllis Goodman, Catherine Tangen et al., “Long-Term Sur-
vival of Participants in the Prostate Cancer Prevention Trial,” New England
Journal of Medicine 369 (2013): 603.
83. Ray Moynihan, Jenny Doust, and David Henry, “Preventing Overdiagnosis: How
to Stop Harming the Healthy,” BMJ 2012;344:e3502 doi: 10.1136/bmj.e3502.
84. Michel Foucault, Discipline and Punish: The Birth of the Prison, tr. Alan Sheri-
dan (NY: Vintage, 1995), p. 296.
85. Christopher Dowrick, Beyond Depression: A New Approach to Understanding
and Management (Oxford: Oxford University Press, 2009), p. 101.
86. Cf. Annemarie Goldstein Jutel, Putting a Name to It: Diagnosis in Contempo-
rary Society (Baltimore: Johns Hopkins University Press, 2011), p. 48: “Normal-
ity, the dreaded bugaboo to which we aspire in cultural practices is . . . deeply
ingrained in medicine.”
87. Horwitz and Wakefield, Loss of Sadness; Christopher Lane, Shyness: How Nor-
mal Behavior Became a Sickness (New Haven: Yale University Press, 2007).
88. Jeffrey Tuttle, Neil Scheurich, and John Ranseen, “Prevalence of ADHD
Diagnosis and Nonmedical Prescription Stimulant Use in Medical Students,”
Academic Psychiatry 34 (2010): 220–23.
89. Frances, Saving Normal, p. xiv.
90. Ronald Kessler, Patricia Berglund, Olga Demler et al., “Lifetime Prevalence and
Age-of-Onset Distributions of DSM-IV Disorders in the National Comorbidity
Survey Replication,” Archives of General Psychiatry 62 (2005): 593–602. On the
requirement of “clinically significant” distress or impairment, see 593.
236 NOTES

91. Kravitz, Epstein, Feldman, “Influence of Patients’ Requests for Direct-to-


Consumer Advertised Antidepressants”: 2000.
92. Jerome Wakefield, Mark Schmitz, and Judith Baer, “Does the DSM-IV Clini-
cal Significance Criterion for Major Depression Reduce False Positives? Evi-
dence from the National Comorbidity Survey Replication,” American Journal
of Psychiatry 167 (2010): 302.
93. Jennifer Croswell, David Ransohoff, and Barnett Kramer, “Principles of Can-
cer Screening: Lessons from History and Study Design Issues,” Seminars in
Oncology 37 (2010): 202.
94. Barbara Henker and Carol Whalen, “Hyperactivity and Attention Deficits,”
American Psychologist 44 (1989): 218.
95. See Jennifer Lenzer, “FDA Is Incapable of Protecting US ‘Against Another
Vioxx,’” BMJ 329 (2004): 1253.
96. On expectation and “healing,” cf. Dostoevsky, The Brothers Karamazov, tr.
Constance Garnett (New York: Viking, 1955), pp. 52–53. “With a nervous
and psychically deranged woman, a sort of convulsion of the whole organism
always took place, and was bound to take place, at the moment of bowing
down to the sacrament, aroused by the expectation of the miracle of healing
and the implicit belief that it would come to pass; and it did come to pass,
though only for a moment.”
97. Robyn Dawes, A House of Cards: Psychology and Psychotherapy Built on Myth
(New York: Free Press, 1994), p. 185.
98. Dawes. House of Cards, p. 194.
99. Francine Shapiro, Getting Past Your Past: Take Control of Your Life with Self-
Help Techniques from EMDR Therapy (New York: Rodale, 2012), p. 11.
100. “This increase . . . bears a striking relation to the employee’s awareness of the
diagnosis but appears unaffected by the institution of antihypertensive ther-
apy or the degree of success in reducing blood pressure.” R. Brian Haynes,
David Sackett, D. Wayne Taylor et al., “Increased Absenteeism from Work
after Detection and Labeling of Hypertensive Patients,” New England Jour-
nal of Medicine 299 (1978): 742. Cf. Howard Stoate, “Can Health Screening
Damage Your Health?” Journal of the Royal College of General Practitioners 39
(1989): 193: “Screening may make people more aware of illness, thus increas-
ing their psychological distress.”
101. Linda Bauman, Linda Cameron, Rich Zimmerman et al., “Illness Represen-
tations and Matching Labels with Symptoms,” Health Psychology 8 (1989):
449–69.
102. A. F. Cooper, “Whose Illness Is It Anyway? Why Patient Perceptions Matter,”
International Journal of Clinical Practice 52 (1998): 551.
103. Eizabeth Loftus and James Fries, “The Potential Perils of Informed Consent,”
McGill Journal of Medicine 11 (2008): 217. On the FDA crackdown on “defi-
cient” (presumably, insufficiently detailed) consent forms, see Norman Fost
and Robert Levine, “The Dysregulation of Human Subjects Research,” JAMA
298 (2007): 2197.
104. James Pennebaker, The Psychology of Physical Symptoms (New York: Springer-
Verlag, 1982), p. 46.
NOTES 237

105. Thomas Weihrauch and Thomas Gauler, “Placebo-Efficacy and Adverse


Effects in Controlled Clinical Trials,” Arzneimittel-Forschung 49 (1999): 388.
106. Elizabeth Loftus and James Fries, “Informed Consent May Be Hazardous to
Health,” Science, April 6, 1979: 11.
107. Rief, Nestoriuc, von Lilienfeld-Toal et al., “Differences in Adverse Effect
Reporting in Placebo Groups in SSRI and Tricyclic Antidepressant Trials”:
1050.
108. Lane, Shyness, p. 98.
109. Simon Wessely, “Old Wine in New Bottles: Neurasthenia and ‘ME,’” Psycho-
logical Medicine 20 (1990): 36.
110. John Jemmott, Peter Ditto, and Robert Croyle, “Judging Health Status: Effects
of Perceived Prevalence and Personal Relevance,” Journal of Personality and
Social Psychology 50 (1986): 899–905. Several variations of the study were
done.
111. Andrew Geers, Suzanne Helfer, Paul Weiland et al., “Expectations and Pla-
cebo Response: A Laboratory Investigation into the Role of Somatic Focus,”
Journal of Behavioral Medicine 29 (2006): 176.
112. Pennebaker, Psychology of Physical Symptoms, pp. 43–44.
113. Christopher Williams and Paul Lees-Haley, “Perceived Toxic Exposure: A
Review of Four Cognitive Influences on Perception of Illness,” Journal of
Social Behavior and Personality 8 (1993): 489–506.
114. Ferrari and Schrader, “The Late Whiplash Syndrome”: 722–26.
115. Robert Ferrari, “The Biopsychosocial Model—A Tool for Rheumatologists,”
Best Practice & Research Clinical Rheumatology 14 (2000): 790.
116. Ferrari, “Biopsychosocial Model”: 791.
117. Cf. Worthington Hooker, Lessons from the History of Medical Delusions (New
York: Baker and Scribner, 1850), p. 57: “it is certain that directing the attention
unduly to the sensations of a part will aggravate an ailment in that part, even
if it be not competent to create it there.”
118. Ferrari, Schrader, “The Late Whiplash Syndrome”: 725.
119. Rona Moss-Morris and Keith Petrie, “Redefining Medical Students’ Disease to
Reduce Morbidity,” Medical Education 35 (2001): 725.
120. Sherwyn Woods, Joseph Natterson, and Jerome Silverman, “Medical Students’
Disease: Hypochondriasis in Medical Education,” Journal of Medical Educa-
tion 41 (1966): 786.
121. Moss-Morris and Petri, “Redefining Medical Students’ Disease”: 725.
122. Laurence Kirmayer, Allan Young, and James Robbins, “Symptom Attribution
in Cultural Perspective,” Canadian Journal of Psychiatry 39 (1994): 585.
123. See, e.g., Elizabeth Loftus and James Fries, “Informed Consent May Be Haz-
ardous to Health,” Science April 6, 1979, p. 11.
124. In a trial of open-label placebo treatment of IBS, 24 percent of the treated
group were taking an antidepressant. See Ted Kaptchuk, Elizabeth Fried-
lander, John Kelley et al., “Placebos without Deception: A Randomized
Controlled Trial in Irritable Bowel Syndrome,” PLoS One 2010;5:e15591.
125. Freidson, Profession of Medicine, p. 260.
126. Theresa Marteau, “Psychological Costs of Screening,” BMJ 299 (1989): 527.
238 NOTES

127. Caryn Lerman, Bruce Trock, Barbara Rimer et al., “Psychological Side Effects
of Breast Cancer Screening,” Health Psychology 10 (1991): 259–67.
128. A. M. Dart, H. Alban Davies, T. Griffith et al., “Does It Help to Undiagnose
Angina?” European Heart Journal 4 (1983): 462. Cf. Ira Ockene, Marilyn Shay,
Joseph Alpert et al., “Unexplained Chest Pain in Patient with Normal Coro-
nary Arteriograms—A Follow-up Study of Functional Status,” New England
Journal of Medicine 303 (1980): 1249–52.
129. Robin Munro, “Judicial Psychiatry in China and Its Political Abuses,” Colum-
bia Journal of Asian Law 14 (2000): 42.
130. Martyn Patfield, “Undiagnosis: An Important New Role for Psychiatry,” Aus-
tralasian Psychiatry 19 (2011): 107–9.
131. Nathaniel Pallone and James Hennessy, “Benevolent Misdiagnosis,” Society 31
(1994): 11–17.
132. Robert Hahn, “Expectations of Sickness: Concept and Evidence of the Nocebo
Phenomenon” in How Expectancies Shape Experience, ed. Irving Kirsch
(Washington, DC: American Psychological Association, 1999), p. 333.
133. Hannah Decker, The Making of DSM-III: A Diagnostic Manual’s Conquest of
American Psychiatry (Oxford: Oxford University Press, 2013), p. 330.
134. Shorter, How Everyone Became Depressed, p. 127.
135. Shorter, How Everyone Became Depressed, p. 16.
136. Robert Spitzer and Jerome Wakefield, “DSM-IV Diagnostic Criterion for
Clinical Significance: Does It Help Solve the False Positive Problem?” Ameri-
can Journal of Psychiatry 156 (1999): 1862.

Chapter 3

1. The New York Times, Nov. 9, 2009.


2. Laura Batstra and Allen Frances, “Diagnostic Inflation: Causes and a Sug-
gested Cure,” Journal of Nervous and Mental Disease 200 (2012): 475.
3. Robyn Dawes, A House of Cards: Psychology and Psychotherapy Built on Myth
(New York: Free Press, 1994), pp. 94, 27.
4. Daniel Shuman, “Softened Science in the Courtroom: Forensic Implications
of a Value-Laden Classification” in Descriptions and Prescriptions: Values,
Mental Disorders, and the DSMs, ed. John Sadler (Baltimore: Johns Hopkins
University Press, 2002), p. 221.
5. Allan Frances, Saving Normal: An Insider’s Revolt against Out-of-Control Psy-
chiatric Diagnosis, DSM-V, Big Pharma, and the Medicalization of Ordinary
Life (New York: William Morrow, 2013), p. 151.
6. Diana Chan and Lester Sireling, “‘I Want to Be Bipolar’” . . . A New Phenom-
enon,” The Psychiatrist Online 34 (2010): 10.
7. E. Fuller Torrey, Witchdoctors and Psychiatrists: The Common Roots of Psycho-
therapy and Its Future (New York: Harper & Row, 1986), pp. 17–18.
8. Melanie Takarangi and Elizabeth Loftus, “Suggestion, Placebos, and False
Memories,” read in manuscript.
9. Stewart Justman, To Feel What Others Feel: Social Sources of the Placebo Effect
(San Francisco: University of California Medical Humanities Press, 2012), ch. 12.
NOTES 239

10. David Jopling, Talking Cures and Placebo Effects (Oxford: Oxford University
Press, 2008), pp. 92–93.
11. Christopher Lasch, The Culture of Narcissism: American Life in an Age of
Diminishing Expectations (New York: Warner, 1979), p. 99. Recall that “nar-
cissistic personality disorder,” a popular diagnosis in its day, was not listed in
DSM-II.
12. Christopher Williams and Paul Lees-Haley, “Perceived Toxic Exposure: A
Review of Four Cognitive Influences on Perception of Illness,” Journal of Social
Behavior and Personality 8 (1993): 500.
13. Rodney Vanderploeg and Heather Belanger, “Screening for a Remote History
of Mild Traumatic Brain Injury: When a Good Idea Is Bad,” Journal of Head
Trauma and Rehabilitation 28 (2013): 215.
14. Jessica Bury and J. Michael Bostwick, “Iatrogenic Delusional Parasitosis: A
Case of Physician-Patient Folie a Deux,” General Hospital Psychiatry 32 (2010):
210–12.
15. Irving Kirsch, The Emperor’s New Drugs: Exploding the Antidepressant Myth
(New York: Basic, 2010), p. 146.
16. Yvonne Nestoriuc, E. John Orav, Matthew Liang et al., “Prediction of Nonspe-
cific Side Effects in Rheumatoid Arthritis Patients by Beliefs about Medicines,”
Arthritis Care and Research 62 (2010): 791.
17. James Pennebaker, The Psychology of Physical Symptoms (New York: Springer-
Verlag, 1982), p. 42.
18. Martin Myers, John Cairns, and Joel Singer, “The Consent Form as a Possi-
ble Cause of Side Effects,” Clinical Pharmacology and Therapeutics 42 (1987):
250–53.
19. Pennebaker, Psychology of Physical Symptoms, p. 53.
20. Jopling, Talking Cures and Placebo Effects, p. 111.
21. David Spiegel, “Placebos in Practice,” BMJ 329 (2004): 927.
22. W. Häuser, E. Hansen, and P. Enck, “Nocebo Phenomena in Medicine: Their
Relevance in Everyday Clinical Practice,” Deutsches Artzeblatt International
109 (2012): 461.
23. Maire Brid Mac Bride, Sandhya Pruthi, Therese Bevers et al., “The Evolution
of Breast Self-Examination to Breast Awareness,” The Breast Journal 18 (2012):
641–43.
24. Delia Cioffi, “Asymmetry of Doubt in Medical Self-Diagnosis: The Ambiguity of
‘Uncertain Wellness,’” Journal of Personality and Social Psychology 61 (1991): 970.
25. Gerd Gigerenzer, Jutta Mata, and Ronald Frank, “Public Knowledge of Breast
and Prostate Cancer Screening in Europe,” JNCI 101 (2009): 1216–20. On
the loss of confidence in one’s health as a result of medicalization, see Marcel
Verweij, “Medicalization as a Moral Problem for Preventive Medicine,”
Bioethics 13 (1999): 113.
26. Ben Goldacre, Bad Pharma: How Drug Companies Mislead Doctors and Harm
the Public (New York: Faber and Faber, 2012), p. 260.
27. Gerald Rosen, Robert Spitzer, and Paul McHugh, “Problems with the Post-
Traumatic Stress Disorder Diagnosis and Its Future in DSM-V,” British Journal
of Psychiatry 192 (2008): 4.
240 NOTES

28. Wiley Mittenberg, Diane DiGiulio, Sean Perrin et al., “Symptoms Following
Mild Head Injury: Expectation as Aetiology,” Journal of Neurology, Neurosur-
gery, and Psychiatry 55 (1992): 200–4; cf. Lars-Gunnar Lundh, “Placebo, Belief,
and Health. A Cognitive-Emotional Model,” Scandinavian Journal of Psychol-
ogy 28 (1987): 134.
29. James Ferguson, “SSRI Antidepressant Medications: Adverse Effects and Toler-
ability,” Primary Care Companion to the Journal of Clinical Psychiatry 3 (2001):
22–27.
30. Arthur Barsky and Jonathan Borus, “Functional Somatic Syndromes,” Annals
of Internal Medicine 130 (1999): 913–14.
31. Michael King, Victoria Holt, and Irwin Nazareth, “Women’s Views of Their
Sexual Difficulties: Agreement and Disagreement with Clinical Diagnoses,”
Archives of Sexual Behavior 36 (2007): 281–88.
32. Hannah Decker, The Making of DSM-III: A Diagnostic Manual’s Conquest of
American Psychiatry (Oxford: Oxford University Press, 2013), p. 160.
33. Robert Spitzer and Jerome Wakefield, “DSM-IV Diagnostic Criterion for Clin-
ical Significance: Does It Help Solve the False Positive Problem?” American
Journal of Psychiatry 156 (1999): 1861.
34. Allan Horwitz and Jerome Wakefield, The Loss of Sadness: How Psychiatry
Transformed Normal Sorrow into Depressive Disorder (Oxford: Oxford Univer-
sity Press, 2007), p. 146.
35. Bertram Forer, “The Fallacy of Personal Validation: A Classroom Demon-
stration of Gullibility,” Journal of Abnormal and Social Psychology 44 (1949):
119–20.
36. E.g., Kirsch, The Emperor’s New Drugs, p. 129.
37. Christopher Lane, Shyness: How Normal Behavior Became a Sickness (New
Haven: Yale University Press, 2007), p. 109.
38. R. Ferrari and H. Schrader, “The Late Whiplash Syndrome: A Biopsychoso-
cial Approach,” Journal of Neurology, Neurosurgery, and Psychiatry 70 (2001):
725.
39. Robert Hahn, “The Nocebo Phenomenon: Scope and Foundations” in The Pla-
cebo Effect: An Interdisciplinary Exploration, ed. Anne Harrington (Cambridge:
Harvard University Press, 1997), p. 61.
40. Hans-Georg Gadamer, The Enigma of Health, tr. Jason Gaiger and Nicholas
Walker (Stanford: Stanford University Press, 1996), p. 96.
41. Arthur Barksy, Ralph Saintfort, Malcolm Rogers et al., “Nonspecific Medica-
tion Side Effects,” JAMA 287 (2002): 623.
42. Phil Edwards, “Questionnaires in Clinical Trials: Guidelines for Optimal
Design and Administration,” http://www.trialsjournal.com/content/11/1/2.
43. M. Sibille, N. Deigat, A. Janin et al., “Adverse Events in Phase-1 Studies: A
Report in 1015 Healthy Volunteers,” European Journal of Clinical Pharmacology
54 (1998): 13–20; Pierre Rosenzweig, Sylvie Brohier, and Andreas Zipfel, “The
Placebo Effect in Healthy Volunteers: Influence of Experimental Conditions
on the Adverse Events Profile during Phase I Studies,” Clinical Pharmacy and
Therapeutics 54 (1993): 578–83.
44. Ferguson, “SSRI Antidepressant Medications”: 24.
NOTES 241

45. Grant Iverson, Brian Brooks, Lynn Ashton et al., “Interview Versus Question-
naire Symptom Reporting in People with the Postconcussion Syndrome,” Jour-
nal of Head Trauma and Rehabilitation 25 (2010): 26–27.
46. Allyson Harrison, Melanie Edwards, and Kevin Parker, “Identifying Students
Faking ADHD: Preliminary Findings and Strategies for Detection,” Archives of
Clinical Neuropsychology 22 (2007): 577–88.
47. Winfried Rief, Yvonne Nestoriuc, Anna von Lilienfeld-Toal et al., “Differences in
Adverse Effect Reporting in Placebo Groups in SSRI and Tricyclic Antidepres-
sant Trials: Systematic Review and Meta-Analysis,” Drug Safety 32 (2009): 1050.
48. Iverson, Brooks, Ashton et al., “Interview Versus Questionnaire Symptom
Reporting”: 29.
49. Dawes, House of Cards, p. 262.
50. S. Rose, J. Bisson, R. Churchill et al., “Psychological Debriefing for Preventing
Post Traumatic Stress Disorder (PTSD),” Cochrane Library 2009, Issue 1: 2. On
CISD and RCTs, see also Simon Wessely, “A Defence of the Randomized Con-
trolled Trial in Mental Health,” BioSocieties 2 (2007): 115–27.
51. Richard McNally, Richard Bryant, and Anke Ehlers, “Does Early Psychologi-
cal Intervention Promote Recovery from Posttraumatic Stress?” Psychological
Science in the Public Interest 4 (2003): 46.
52. Scott Lilienfeld, “Psychological Treatments That Cause Harm,” Perspectives on
Psychological Science 2 (2007): 59.
53. Cf. Richard Bootzin and Elaine Bailey, “Understanding Placebo, Nocebo, and
Iatrogenic Treatment Effects,” Journal of Clinical Psychology 61 (2005): 874.
54. Ethan Watters, Crazy Like Us: The Globalization of the American Psyche (New
York: Free Press, 2010), p. 119.

Interlude

1. The phrases used in various studies appear in Lene Vase, Joseph Riley, and
Donald Price, “A Comparison of Placebo Effects in Clinical Analgesic Trials
Versus Studies of Placebo Analgesia,” Pain 99 (2002): 447.
2. Stewart Justman, To Feel What Others Feel: Social Sources of the Placebo Effect
(San Francisco: University of California Medical Humanities Press, 2012),
ch. 11.
3. John Haygarth, Of the Imagination as a Cause and a Cure of Disorders of the
Body (Bath: Cruttwell, 1800), pp. 3–4.
4. Franklin Miller and Ted Kaptchuk, “Deception of Subjects in Neuroscience
Research,” Journal of Neuroscience 28 (2008): 4841–43.
5. Don Long, Sumio Uematsu, and Richard Kouba, “Placebo Responses to Medi-
cal Device Therapy for Pain,” Stereotactic and Functional Neurosurgery 53
(1989): 151–52. On the surprising efficacy of sham electroconvulsive therapy,
see Pat Bracken, Philip Thomas, Sami Timimi et al., “Psychiatry Beyond the
Current Paradigm,” British Journal of Psychiatry 201 (2012): 430–34.
6. Barbara Henker and Carol Whalen, “Hyperactivity and Attention Deficits,”
American Psychologist 44 (1989): 221.
242 NOTES

7. Gary Saul Morson, “Anna Karenina” in Our Time: Seeing More Wisely (New
Haven: Yale University Press, 2007), p. 45.

Chapter 4

1. Lynn Payer, Disease-Mongers: How Doctors, Drug Companies, and Insurers Are
Making You Feel Sick (New York: John Wiley, 1992), p. 16.
2. Richard Rosenfield, “Harm,” Otolaryngology—Head and Neck Surgery 146
(2012): 687–89.
3. Experiments designed to induce harm also incur ethical objections, though
placebo experiments aren’t free of such problems either.
4. Winfried Häuser, Emil Hansen, and Paul Enck, “Nocebo Phenomena in Medi-
cine,” Deutsches Ärtzteblatt International 109 (2012): 460.
5. Irving Kirsch, The Emperor’s New Drugs: Exploding the Antidepressant Myth
(New York: Basic, 2010), p. 137.
6. F. Benedetti, M. Lanotte, L. Lopiano et al., “When Words Are Painful: Unrave-
ling the Mechanisms of the Nocebo Effect,” Neuroscience 147 (2007): 268.
Cf. Martina Amanzio, Luca Latini Corazzini, Lena Vase et al., “A Systematic
Review of Adverse Events in Placebo Groups of Anti-Migraine Clinical Trials,”
Pain 146 (2009): 261.
7. Thomas Weihrauch and Thomas Gauler, “Placebo-Efficacy and Adverse Effects
in Controlled Clinical Trials,” Arzneimittel-Forschung 49 (1999): 390.
8. A. F. Cooper, “Whose Illness Is It Anyway? Why Patient Perceptions Matter,”
International Journal of Clinical Practice 52 (1998): 555.
9. K. B. Thomas, “General Practice Consultations: Is There Any Point in Being
Positive?” BMJ 294 (1987): 1200–1202.
10. Derek Summerfield, “Cross-Cultural Perspectives on the Medicalization of
Human Suffering,” in Posttraumatic Stress Disorder: Issues and Controversies,
ed. G. M. Rosen (New York: John Wiley, 2004), pp. 233–45, esp. p. 237.
11. Thomas, “General Practice Consultations”: 1201. Häuser, Hansen, and Enck,
“Nocebo Phenomena in Medicine,” identify “causing uncertainty” as a mecha-
nism of the nocebo effect (461). Exactly what Thomas did when he told patients
suffering from transient illnesses that he didn’t know what was wrong with them
(and that he couldn’t be sure a pill would help them, if a pill were prescribed).
12. K. B. Thomas, “Temporarily Dependent Patient in General Practice,” British
Medical Journal, Vol. 1, No. 5908 (March 30, 1974): 626.
13. Harold Sox, Jr., Iris Margulies, and Carol Hill Sox, “Psychologically Mediated
Effects of Diagnostic Tests,” Annals of Internal Medicine 95 (1981): 680–85.
14. Sox, Jr., Margulies, and Hill Sox, “Psychologically Mediated Effects of Diagnos-
tic Tests”: 684.
15. Sox, Jr., Margulies, and Hill Sox, “Psychologically Mediated Effects of Diagnos-
tic Tests”: 685.
16. On “incidentalomas,” see, e.g., Lisa Rosenbaum, “Living Unlabeled—Diagnosis
and Disorder,” New England Journal of Medicine 359 (2008): 1650–53.
17. See, e.g., Laura Batstra and Allen Frances, “Diagnostic Inflation: Causes and a
Suggested Cure,” Journal of Nervous and Mental Disease 200 (2012): 474–79.
NOTES 243

18. Howard Brody and David Waters, “Diagnosis Is Treatment,” Journal of Family
Practice 10 (1980): 448–49.
19. Marcus Huibers and Simon Wessely, “The Act of Diagnosis: Pros and Cons of
Labelling Chronic Fatigue Syndrome,” Psychological Medicine 36 (2006): 898.
A thoughtful critique of “diagnosis for the sake of giving a diagnosis” is John
Bedson, Rob McCarney and Peter Croft, “Labelling Chronic Illness in Primary
Care: A Good or a Bad Thing?” British Journal of General Practice 54 (2004):
936.
20. Payer, Disease-Mongers, p. 259.
21. Allen Frances, “The New Crisis of Confidence in Psychiatric Diagnosis,”
Annals of Internal Medicine online, May 17, 2013, doi:10.7326/0003-4819-
159-3-201308060-00655.
22. On the abuse potential of stimulants, see, e.g., Nora Volkow, “Stimulant Medi-
cations: How to Minimize Their Reinforcing Effects?” American Journal of
Psychiatry 163 (2006): 359–61.
23. Fabrizio Benedetti, “Drugs and Placebos: What’s the Difference?” EMBO
Reports (2014): 2. doi:10.1002/embr.201338399.
24. Steven Miles, The Hippocratic Oath and the Ethics of Medicine (Oxford: Oxford
University Press, 2004), p. 129.
25. Simon Gilbody, Trevor Sheldon, and Simon Wessely, “Should We Screen for
Depression?” BMJ 332 (2006): 1027.
26. Allan Horwitz and Jerome Wakefield, The Loss of Sadness: How Psychia-
try Transformed Normal Sorrow into Depressive Disorder (Oxford: Oxford
University Press, 2007), p. 164.
27. Michael Klinkman, James Coyne, Susan Gallo et al., “False Positives, False Neg-
atives, and the Validity of the Diagnosis of Major Depression in Primary Care,”
Archives of Family Medicine 7 (1998): 451–61.
28. Harold Pincus, Wendy Wakefield Davis, and Laurie McQueen, “‘Subthresh-
old’ Mental Disorders: A Review and Synthesis of Studies on [sic] Minor
Depression and Other ‘Brand Names,’” British Journal of Psychiatry 174
(1999): 294.
29. Brett Thombs, James Coyne, Pim Cuijpers et al., “Rethinking Recommen-
dations for Screening for Depression in Primary Care,” Canadian Medical
Association Journal 2011. doi:10.1503 /cmaj.111035, p. 4.
30. Horwitz and Wakefield, Loss of Sadness, p. 156.
31. Sian Lewis, “A Search for Meaning: Making Sense of Depression,” Journal of
Mental Health 4 (1995): 369–82; unpaginated.
32. Joanna Moncrieff, The Myth of the Chemical Cure: A Critique of Psychiatric
Drug Treatment (New York: Palgrave Macmillan, 2008), pp. 164–68.
33. Larry Goldman, Nancy Nielsen, and Hunter Champion, “Awareness, Diag-
nosis, and Treatment of Depression,” Journal of General Internal Medicine 14
(1999): 569–80.
34. If stigma were really such a formidable deterrent, antidepressants wouldn’t be
enjoying a booming market.
35. Richard Mayou, “Medically Unexplained Physical Symptoms,” BMJ 303 (1991):
534–35.
244 NOTES

36. Kurt Kroenke, Robert Spitzer, Janet Williams et al., “Physical Symptoms in Pri-
mary Care: Predictors of Psychiatric Disorders and Functional Impairment,”
Archives of Family Medicine 3 (1994): 774–79.
37. Richard Kravitz, Ronald Epstein, and Mitchell Feldman, “Influence of Patients’
Requests for Direct-to-Consumer Advertised Antidepressants,” JAMA 293
(2005): 1996.
38. In a diagnostic questionnaire for primary-care patients, Spitzer—the author of the
DSM criteria—has actually substituted “more than half the days” for the “nearly every
day” criterion. See Robert Spitzer, Kurt Kroenke, Janet Williams et al., “Validation
and Utility of a Self-Report Version of PRIME-MD,” JAMA 282 (1999): 1737–44.
39. G. Andrews, T. M. Anderson, T. Slade et al., “Classification of Anxiety and
Depressive Disorders: Problems and Solutions,” Depression and Anxiety 25
(2008): 274–81. Robert Spitzer, the designer of DSM-III, has argued that “reduc-
ing the number of symptoms required to make a diagnosis of depression . . .
would make it easier for primary care physicians to remember and evaluate
them.” David Brody, Steven Hahn, and Robert Spitzer, “Identifying Patients with
Depression in the Primary Care Setting: A More Efficient Method,” Archives of
Internal Medicine 158 (1998): 2470.
40. Like the two-question test proposed by the USPSTF, the user-friendly version
of the DSM-IV criteria for depression given in T. M. Luhrmann’s study of the
culture of American psychiatry leaves out all temporal requirements except
the period of two weeks, a critical omission that may well reflect the way the
criteria are actually used. T. M. Luhrmann, Of Two Minds: An Anthropologist
Looks at American Psychiatry (New York: Vintage, 2001), pp. 34–35.
41. Robert Spitzer and Jerome Wakefield, “DSM-IV Diagnostic Criterion for Clin-
ical Significance: Does It Help Solve the False Positive Problem?” American
Journal of Psychiatry 156 (1999): 1857.
42. Gregory Simon, Michael VonKorff, Marco Piccinelli et al., “An International
Study of the Relation between Somatic Symptoms and Depression,” New
England Journal of Medicine 341 (1999): 1332.
43. John Williams, Polly Hitchcock Noël, Jeffrey Cordes et al., “Is This Patient Clin-
ically Depressed?” JAMA 287 (2002): 1160-1, 1169.
44. David Healy, Derelie Mangin, and Barbara Mintzes, “The Ethics of Rand-
omized Placebo Controlled Trials of Antidepressants with Pregnant Women,”
International Journal of Risk and Safety in Medicine 22 (2010): 7–16.
45. Luhrmann, Of Two Minds, p. 236.
46. Jeffrey Pyne, Kathryn Rost, Farah Farahati et al., “One Size Fits Some: The
Impact of Patient Treatment Attitudes on the Cost-Effectiveness of a Depres-
sion Primary-Care Intervention,” Psychological Medicine 35 (2005): 850.
47. Kathryn Rost, Paul Nutting, Jeffrey Smith et al., “Improving Depression Out-
comes in Community Primary Care Practice,” Journal of General Internal Med-
icine 16 (2001): 147.
48. Kroenke, Spitzer, Williams et al., “Physical Symptoms in Primary Care”: 777.
49. On distress caused by a diagnosis of low sexual desire—not by the lack of desire
itself—see Annemarie Goldstein Jutel, Putting a Name to It: Diagnosis in Contem-
porary Society (Baltimore: Johns Hopkins University Press, 2011), pp. 105–6.
NOTES 245

50. J. Alexander Bodkin, Harrison Pope, Michael Detke et al., “Is PTSD Caused by
Traumatic Stress?” Journal of Anxiety Disorders 21 (2007): 176–82.
51. Allan Horwitz, Creating Mental Illness (Chicago: University of Chicago Press,
2002), p. 80.
52. On a popular treatment for PTSD, see my To Feel What Others Feel: Social
Sources of the Placebo Effect (San Francisco: University of California Medical
Humanities Press, 2012), ch. 11.
53. Mitchell Wilson, “DSM-III and the Transformation of American Psychiatry: A
History,” American Journal of Psychiatry 150 (1993): 408.
54. Foreword to Horwitz and Wakefield, Loss of Sadness, p. viii.
55. Joanna Moncrieff and Irving Kirsch, “Efficacy of Antidepressants in Adults,”
BMJ 331 (2005): 155–57.
56. Fritz Schröder, Jonas Hugosson, Monique Roobol et al., “Screening and
Prostate-Cancer Mortality in a Randomized European Study,” New England
Journal of Medicine 360 (2009): 1320, 1326.
57. Fritz Schröder, Jonas Hugosson, Monique Roobol et al., “Prostate Cancer Mor-
tality at 11 Years of Follow-up,” New England Journal of Medicine 366 (2012):
981–90.
58. Otis Brawley, “Trends in Prostate Cancer in the United States,” Journal of the
National Cancer Institute Monographs 45 (2012): 154.
59. R. Brian Haynes, David Sackett, D. Wayne Taylor et al., “Increased Absentee-
ism from Work after Detection and Labeling of Hypertensive Patients,” New
England Journal of Medicine 299 (1978): 741–44.
60. Haynes, Sackett, Taylor et al., “Increased Absenteeism”: 742.
61. August 25, 2013.
62. Allyson Harrison, Melanie Edwards, and Kevin Parker, “Identifying Students
Faking ADHD: Preliminary Findings and Strategies for Detection,” Archives of
Clinical Neuropsychology 22 (2007): 577–88.
63. Harrison, Edwards, Parker, “Identifying Students Faking ADHD”: 579.
64. Weihrauch, and Gauler, “Placebo-Efficacy and Adverse Effects in Controlled
Clinical Trials”: 388.
65. Robert Ferrari, “The Biopsychosocial Model—A Tool for Rheumatologists,”
Best Practice and Research Clinical Rheumatology 14 (2000): 790.
66. Peter Conrad, The Medicalization of Society: On the Transformation of Human
Conditions into Treatable Disorders (Baltimore: Johns Hopkins University
Press, 2007), p. 59.
67. Laura Batstra and Allen Frances, “DSM-V Further Inflates Attention Deficit
Hyperactivity Disorder,” Journal of Nervous and Mental Disease 200 (2012):
486–88.
68. Herbert Spiegel, “Nocebo: The Power of Suggestibility,” Preventive Medicine 26
(1997): 620.
69. Arthur Barsky and Jonathan Borus, “Functional Somatic Syndromes,” Annals
of Internal Medicine 130 (1999): 915.
70. Julie Suhr and John Gunstad, “Further Exploration of the Effect of ‘Diagno-
sis Threat’ on Cognitive Performance in Individuals with Mild Head Injury,”
Journal of the International Neuropsychological Society 11 (2005): 23.
246 NOTES

71. Richard Morrow, E. Jane Garland, and James Wright, “Influence of Relative
Age and Diagnosis on Treatment of Attention-Deficit/Hyperactivity Disorder
in Children,” Canadian Medical Association Journal 184 (2012): 755–62. The
grade cutoff in Canada is Dec. 31.
72. Jean-Luc Mommaerts, Beerens Gerlinde, Van den Block Lieve et al., “Influence
of Methylphenidate Treatment Assumptions on Cognitive Function in Healthy
Young Adults in a Double-Blind, Placebo-Controlled Trial,” Psychological
Research and Behavior Management 6 (2013): 65–74.
73. Fabrizio Benedetti, Placebo Effects: Understanding the Mechanisms in Health
and Disease (Oxford: Oxford University Press, 2009), p. 136.
74. Cf. Jennifer Davis-Berman and Frances Pestello, “Medicating for ADD/ADHD:
Personal and Social Issues,” International Journal of Mental Health and Addic-
tion 8 (2010): 487.
75. Ilina Singh, “Clinical Implications of Ethical Concepts: Moral Self-
Understandings in Children Taking Methylphenidate for ADHD,” Clinical
Child Psychology and Psychiatry 112 (2007): 172.
76. A. Sandler, C. Glesne, and G. Geller, “Children’s and Parents’ Perspectives on
Open-Label Use of Placebos in the Treatment of ADHD,” Child: Care, Health
and Development 34 (2008): 111–20.
77. Sandler, Glesne, and Geller, “Children’s and Parents’ Perspectives on Open-
Label Use of Placebos in the Treatment of ADHD”: 111.
78. Ibid.
79. Adrian Sandler, “Placebo Effects in Developmental Disabilities: Implications
for Research and Practice,” Mental Retardation and Developmental Disabilities
Research Reviews 11 (2005): 164–70.
80. Glen Cayler, David Lynn, and Edwina Stein, “Effect of Cardiac ‘Nondisease’
on Intellectual and Perceptual Motor Development,” British Heart Journal 35
(1973): 543–47.
81. The MTA Cooperative Group, “A 14-Month Randomized Clinical Trial of
Treatment Strategies for Attention-Deficit/Hyperactivity Disorder,” Archives of
General Psychiatry 56 (1999): 1075.
82. Ibid.
83. Peter Jensen, L. Eugene Arnold, James Swanson et al., “3-Year Follow-up of the
NIMH MTA Study,” Journal of the American Academy of Child and Adolescent
Psychiatry 46 (2007): 989–1002.
84. Jensen, Arnold, Swanson et al., “3-Year Follow-up of the NIMH MTA Study”:
999.
85. On medical self-fulfilling prophecies, see Nicholas Christakis, Death Foretold:
Prophecy and Diagnosis in Medical Care (Chicago: University of Chicago Press,
1999), ch. 6.
86. Barbara Henker and Carol Whalen, “Hyperactivity and Attention Deficits,”
American Psychologist 44 (1989): 221.
87. Moncrieff, The Myth of the Chemical Cure, p. 221.
88. Russell Barkley, “Major Life Activity and Health Outcomes Associated with
Attention-Deficit/Hyperactivity Disorder,” Journal of Clinical Psychiatry 63
(2002), supp. 12: 10–15.
NOTES 247

89. Rae Thomas, Geoffrey Mitchell, and Laura Batstra, “Attention-deficit/


Hyperactivity Disorder: Are We Helping or Harming?” BMJ 347 (2013): f6172.
90. Ruth Stein, “Measurement of ADHD Outcomes: Implications for the Future,”
Journal of Pediatric Psychology 32 (2007): 728–31.
91. John Locke, Some Thoughts Concerning Education (Oxford: Clarendon Press,
1989), p. 112.
92. Horwitz and Wakefield, Loss of Sadness, p. 164.
93. Alan Schwarz and Sarah Cohen, “A.D.H.D. Seen in 11% of U.S. Children as
Diagnoses Rise,” The New York Times, March 31, 2013.
94. Nicola Mondaini, Paolo Gontero, Gianluca Guibilei et al., “Finasteride 5 mg and
Sexual Side Effects: How Many of These Are Related to a Nocebo Phenomenon?”
Journal of Sexual Medicine 4 (2007): 1708–12. Similar results emerged from a
study in which men taking the antihypertensive drug metoprolol were randomly
sorted into three groups, one of which was told the drug was METO and might
induce erectile dysfunction, although “this side effect is rather uncommon”; one
of which was told the drug was METO but given no information about sexual
effects; one of which was neither told the name of the drug nor informed of sexual
effects. After 60 days, the incidence of erectile dysfunction was 32% in group 1,
13% in group 2, and 8% in group 3 (p<0.01). G. Cocco, “Erectile Dysfunction after
Therapy with Metoprolol: The Hawthorne Effect,” Cardiology 2009 (112): 174–77.
95. See the discussion in Chapter 2.
96. Arthur Barsky, Ralph Saintfort, Malcolm Rogers et al., “Nonspecific Medica-
tion Side Effects and the Nocebo Phenomenon,” JAMA 287 (2002): 624.
97. Michael Irwig and Swapna Kolukula, “Persistent Sexual Side Effects of Finas-
teride for Male Pattern Hair Loss,” Journal of Sexual Medicine 8 (2011): 1747.
98. See Stewart Justman, “The Finasteride Riddle,” Journal of Signs and Symptoms
3 (2014): 154–59.
99. Montaigne, “On the Power of the Imagination,” Complete Essays, tr. M. A.
Screech (London: Penguin, 2003), p. 112.
100. Nathaniel Pallone and James Hennessy, “Benevolent Misdiagnosis,” Society 31
(1994): 15–16.
101. Kravitz, Epstein, Feldman, “Influence of Patients’ Requests for Direct-to-
Consumer Advertised Antidepressants”: 2000. On adjustment disorder, see
Christopher Dowrick, Beyond Depression: A New Approach to Understanding
and Management (Oxford: Oxford University Press, 2009), pp. 64–65.
102. James Ferguson, “SSRI Antidepressant Medications: Adverse Effects and
Tolerability,” Primary Care Companion to the Journal of Clinical Psychiatry 3
(2001): 22–27.

Chapter 5

1. S. Wessely, C. Nimnuan, and M. Sharpe, “Functional Somatic Syndromes:


One or Many?” The Lancet 354 (1999): 936.
2. Nikolas Rose, “Neurochemical Selves,” Society 41 (2003): 55.
3. Fabrizio Benedetti, Placebo Effects: Understanding the Mechanisms in Health
and Disease (New York: Oxford University Press, 2009), p. 253.
248 NOTES

4. David Healy, “The Latest Mania: Selling Bipolar Disorder,” PLoS Medicine 3 (4)
(2006): e185. Cf. Joanna Moncrieff, “The Medicalisation of ‘Ups and Downs’:
The Marketing of the New Bipolar Disorder,” Transcultural Psychiatry 51
(2014): 581–98.
5. Roy Porter, The Greatest Benefit to Mankind (Norton, 1999), p. 442.
6. Kenneth Kendler, Rodrigo Muñoz, and George Murphy, “The Development of
the Feighner Criteria,” American Journal of Psychiatry 167 (2010): 134–42.
7. Walter Cassidy, Norris Flanagan, Marie Spellman, and Mandel Cohen, “Clini-
cal Observations in [sic] Manic-Depressive Disease,” JAMA 164 (1957): 1535.
8. Joanna Moncrieff and David Cohen, “How Do Psychiatric Drugs Work?” BMJ,
published online May 29, 2009; doi:10.1136/bmj.b1963
9. Winfried Häuser, Emil Hansen, and Paul Enck, “Nocebo Phenomena in Medi-
cine: Their Relevance in Everyday Clinical Practice,” Deutsches Artzeblatt
International 109 (2012): 463. Cf. Kate Faasse and Keith Petrie, “The Nocebo
Effect: Patient Expectations and Medication Side Effects,” Postgraduate Medi-
cal Journal, doi:10.1136/postgradmedj-2012-131730; Kate Faasse, Tim Cundy,
Greg Gamble et al., “The Effect of an Apparent Change to a Branded or Generic
Medication on Drug Effectiveness and Side Effects,” Psychosomatic Medicine 75
(2013): 90–96.
10. A. Branthwaite and P. Cooper, “Analgesic Effects of Branding in Treatment of
Headaches,” British Medical Journal 202 (1981): 1576–78.
11. E.g., Stewart Justman, “Placebos in the Clinic,” Journal of the Royal Society of
Medicine 106 (2013): 208–9.
12. Luana Colloca and Franklin Miller, “Harnessing the Placebo Effect: The Need
for Translational Research,” Philosophical Transactions of the Royal Society B
366 (2011): 1922–30.
13. Benedetti, Placebo Effects, p. 34.
14. Winfried Rief, Jerry Avorn, and Arthur Barsky, “Medication-Attributed Adverse
Effects in Placebo Groups,” Archives of Internal Medicine 166 (2006):158.
15. Kurt Kroenke, Robert Spitzer, Janet Williams et al., “Physical Symptoms in Pri-
mary Care: Predictors of Psychiatric Disorders and Functional Impairment,”
Archives of Family Medicine 3 (1994): 777.
16. Marcus Reidenberg and David Lowenthal, “Adverse Nondrug Reactions,” New
England Journal of Medicine 279 (1968): 678–79.
17. Henry Beecher, “The Powerful Placebo,” JAMA, Dec. 24, 1955; 1602–6.
18. Jeremy Greene, Generic: The Unbranding of Modern Medicine (Baltimore: Johns
Hopkins University Press, 2104), p. 63.
19. See Stewart Justman, The Psychological Mystique (Evanston: Northwestern Uni-
versity Press, 1998), ch. 2.
20. On the use of KOLs, see, e.g., Melissa Raven and Peter Parry, “Psychotropic
Marketing Practices and Problems: Implications for DSM-V,” Journal of Nerv-
ous and Mental Disease 200 (2012): 512–16.
21. Edward Bernays, Propaganda (Brooklyn, New York: Ig, 2005; orig. pub. 1928), p. 98.
22. Zinelabidine Abouelfadel and E. David Crawford, “Experience of Prostate
Cancer Awareness Week,” in Prostate Cancer Screening, eds. Ian Thompson,
Martin Resnick, and Eric Klein (Totowa, NJ: Humana Press, 2001), p. 241. On
NOTES 249

Schering Plough’s hand in the creation of Prostate Cancer Awareness Week,


as well as the use of “third-party messages,” see Joseph Dumit, Drugs for Life:
How Pharmaceutical Companies Define Our Health (Durham: Duke University
Press, 2012), pp. 42–43.
23. Cited in Siddhartha Mukherjee, The Emperor of All Maladies: A Biography of
Cancer (London: Fourth Estate, 2011), p. 111.
24. In defense of “pro-social” propaganda, see Ambar Basu and Jian Wang, “The
Role of Branding in Public Health Campaigns,” Journal of Communication
Management 13 (2009): 77–91.
25. Edward DeAntoni, “Eight Years of ‘Prostate Cancer Awareness Week,’” Cancer
80 (1997): 1849.
26. Allan Frances, Saving Normal: An Insider’s Revolt against Out-of-Control Psy-
chiatric Diagnosis, DSM-V, Big Pharma, and the Medicalization of Ordinary Life
(New York: William Morrow, 2013), p. 125.
27. Theodore Stone and B. Cullen Burris, “Melancholia: Clinical Study of Fifty
Selected Cases,” JAMA 142 (1950): 165–68.
28. Jennifer Croswell, David Ransohoff, and Barnett Kramer, “Principles of Cancer
Screening: Lessons from History and Study Design Issues,” Seminars in Oncol-
ogy 37 (2010): 202–15.
29. Dan Blumhagen, “Hyper-Tension: A Folk Illness with a Medical Name,” Cul-
ture, Medicine and Psychiatry 4 (1980): 222.
30. Howard Leventhal, Michael Diefenbach, and Elaine Leventhal, “Illness Cogni-
tion: Using Common Sense to Understand Treatment Adherence and Affect
Cognition Interactions,” Cognitive Therapy and Research 16 (1992): 151.
31. William Hamilton, Arlene Gallagher, Janice Thomas et al., “The Prognosis of
Different Fatigue Diagnostic Labels: A Longitudinal Survey,” Family Practice 22
(2005): 387.
32. Steven Hyman, “The Diagnosis of Mental Disorders: The Problem of Reifica-
tion,” Annual Review of Clinical Psychology 6 (2010): 168.
33. Edward Shorter, How Everyone Became Depressed: The Rise and Fall of the
Nervous Breakdown (Oxford: Oxford University Press, 2013), p. 152. Cf. Derek
Summerfield, “Cross-Cultural Perspectives on the Medicalization of Human
Suffering,” in Posttraumatic Stress Disorder: Issues and Controversies, ed.
G. M. Rosen (New York: John Wiley, 2004), p. 240: “What a patient brings to
a medical setting is what he sees as appropriate to bring to such a setting. This
generally means bringing symptoms.”
34. See Reidenberg and Lowenthal, “Adverse Nondrug Reactions.” On the Generic
Assessment of Side Effects scale proposed for use in clinical trials, “nervous-
ness” is given as a synonym for “irritability.” See W. Rief, J. Glombiewski, and
A. Barsky, Generic Assessment of Side Effects (2009). www.GASE-scale.com.
35. Jerome Bruner and Leo Postman, “On the Perception of Incongruity: A Para-
digm,” Journal of Personality 18 (1949): 222.
36. Arthur Barsky and Jonathan Borus, “Functional Somatic Syndromes,” Annals
of Internal Medicine 130 (1999): 913.
37. James Pennebaker, The Psychology of Physical Symptoms (New York: Springer-
Verlag, 1982), ch. 3.
250 NOTES

38. Christopher Williams and Paul Lees-Haley, “Perceived Toxic Exposure: A


Review of Four Cognitive Influences on Perception of Illness,” Journal of Social
Behavior and Personality 8 (1993): 498, 500.
39. M. Angermeyer and H. Matschinger, “The Stigma of Mental Illness: Effects
of Labelling on Public Attitudes Toward People with Mental Disorder,” Acta
Psychiatrica Scandinavica 108 (2003): 304–09. Cf. J. Read, N. Haslam, L. Sayce
et al., “Prejudice and Schizophrenia: A Review of the ‘Mental Illness Is an Ill-
ness Like Any Other’ Approach,” Acta Psychiatrica Scandinavica 114 (2006):
303–18.
40. L. Hunt Monahan, “Diagnosis and Expectation for Change: An Inverse Rela-
tionship,” Journal of Nervous and Mental Disease 164 (1977): 214–17.
41. Nortin Hadler, “Fibromyalgia, Chronic Fatigue, and Other Iatrogenic Diagnos-
tic Algorithms,” Postgraduate Medicine 102 (1997): 176.
42. Nortin Hadler, Worried Sick: A Prescription for Health in an Overtreated Amer-
ica (Chapel Hill: University of North Carolina Press, 2008), p. 143.
43. Frederick Wolfe, Hugh Smythe, Muhammad Yunus et al., “The American Col-
lege of Rheumatology Criteria for the Classification of Fibromyalgia,” Arthritis
and Rheumatism 33 (1990): 160–172; Alex Berenson, “Drug Approved. Is Dis-
ease Real?” The New York Times January 14, 2008.
44. Harold Sox, Jr., Iris Margulies, Carol Hill Sox, “Psychologically Mediated
Effects of Diagnostic Tests,” Annals of Internal Medicine 95 (1981): 680–85.
45. Jeremy Howick, Felicity Bishop, Carl Heneghan et al., “Placebo Use in the
United Kingdom: Results from a National Survey of Primary Care Practition-
ers,” PLoS One 8 (2013): e58247.
46. Peter Ditto and Robert Croyle, “Understanding the Impact of Risk Factor
Test Results: Insights from a Basic Research Program,” in Psychosocial Effects
of Screening for Disease Prevention and Detection, ed. Robert Croyle (Oxford:
Oxford University Press, 1995), pp. 144–81.
47. Subjects were informed that people who lack the fictitious enzyme “seem to be
relatively susceptible to a complex of mild but irritating pancreatic disorders.”
Robert Croyle and Gerald Sande, “Denial and Confirmatory Search: Paradoxi-
cal Consequences of Medical Diagnosis,” Journal of Applied Social Psychology
18 (1988): 477.
48. John Jemmott, Peter Ditto, and Robert Croyle, “Judging Health Status: Effects
of Perceived Prevalence and Personal Relevance,” Journal of Personality and
Social Psychology 50 (1986): 901.
49. Abraham Bergman, “Controlling Iatrogenic Diseases,” Israel Journal of Medical
Sciences 15 (1979): 200.
50. Frances, Saving Normal, p. 131.
51. Nicholas Spanos, John Weekes, and Lorne Bertrand, “Multiple Personality: A
Social Psychological Perspective,” Journal of Abnormal Psychology 94 (1985):
362.
52. Cited in H. Merskey, “The Manufacture of Personalities: The Production of
Multiple Personality Disorder,” British Journal of Psychiatry 160 (1992): 331–32.
53. Cited Spanos, Weekes, Bertrand, “Multiple Personality: A Social Psychological
Perspective”: 364.
NOTES 251

54. Spanos, Weekes, Bertrand, “Multiple Personality”: 366.


55. Spanos, Weekes, Bertrand, “Multiple Personality”: 370.
56. Spanos, Weekes, Bertrand, “Multiple Personality”: 373.
57. Louis Charland, “A Madness for Identity: Psychiatric Labels, Consumer Auton-
omy, and the Perils of the Internet,” Philosophy, Psychiatry, and Psychology 11
(2004): 335–49.
58. Richard Bootzin and Elaine Bailey, “Understanding Placebo, Nocebo, and Iat-
rogenic Treatment Effects,” Journal of Clinical Psychology 61 (2005): 877.
59. Spanos, Weekes, Bertrand, “Multiple Personality”: 366.
60. Spanos, Weekes, Bertrand, “Multiple Personality”: 374.
61. Edward Shorter, Doctors and Their Patients: A Social History (New Brunswick:
Transaction, 1991), p. 252.
62. Lisa Rosenbaum, “Living Unlabeled—Diagnosis and Disorder,” New England
Journal of Medicine 359 (2008): 1652.
63. Kathryn Rost, G. Richard Smith, Daryl Matthews, et al., “The Deliberate Mis-
diagnosis of Major Depression in Primary Care,” Archives of Family Medicine 3
(1994): 334.
64. Robert Spitzer and Jerome Wakefield, “DSM-IV Diagnostic Criterion for Clin-
ical Significance: Does It Help Solve the False Positive Problem?” American
Journal of Psychiatry 156 (1999): 1862.
65. Lee Robins, “Diagnostic Grammar and Assessment: Translating Criteria into
Questions,” Psychological Medicine 19 (1989): 64.
66. Kurt Kroenke, Robert Spitzer, Janet Williams et al., “Physical Symptoms in Pri-
mary Care: Predictors of Psychiatric Disorders and Functional Impairment,”
Archives of Family Medicine 3 (1994): 775.
67. Wolfgang Hiller, Winfried Rief, and Elmar Brähler, “Somatization in the Popu-
lation: From Mild Bodily Misperceptions to Disabling Symptoms,” Social Psy-
chiatry and Psychiatric Epidemiology 41 (2006): 704.
68. Montaigne leaves no doubt about his preference for deeds over words. See, e.g.,
his essay “On Educating Children.” On generalist vs. specialist, see the satiric
portraits of Drs. Holmes and Bradshaw in Virginia Woolf ’s Mrs. Dalloway. For a
case where diagnostic efforts come to nothing but symptoms yield to treatment,
see Annemarie Goldstein Jutel, Putting a Name to It: Diagnosis in Contemporary
Society (Baltimore: Johns Hopkins University Press, 2011), pp. 122–26.
69. Anthony Dixon, “‘There’s a Lot of It About’: Clinical Strategies in Family Prac-
tice,” Journal of the Royal College of General Practitioners 36 (1986): 468–71.
70. K. B. Thomas, “Temporarily Dependent Patient in General Practice,” British
Medical Journal, Vol. 1, No. 5908 (March 30, 1974): 625–26.
71. M. Drury, The Danger of Words (New York: Humanities Press, 1973), p. 15.
72. Leo Tolstoy, War and Peace, tr. Louise and Aylmer Maude (Oxford: Oxford
University Press, 1991), p. 1286.
73. Wessely, Nimnuan, and Sharpe, “Functional Somatic Syndromes”: 937.
74. Montaigne, “On Experience,” Complete Essays, tr. M. A. Screech (London:
Penguin, 2003), p. 1234.
75. Leo Tolstoy, Anna Karenina, tr. Constance Garnett; rev. Leonard Kent and Nina
Berberova (New York: Modern Library, 1993), p. 134.
252 NOTES

76. Nikolas Rose, “Beyond Medicalisation,” Lancet 369 (2007): 700.


77. Tolstoy, War and Peace, p. 700.
78. Charles Rosenberg, “Contested Boundaries: Psychiatry, Disease, and Diagno-
sis,” Perspectives in Biology and Medicine 49 (2006); 412.
79. War and Peace, p. 701.

Chapter 6

1. Matthew Miller, Sonja Swanson, Deborah Azrael et al., “Antidepressant Dose,


Age, and the Risk of Deliberate Self-harm,” JAMA Internal Medicine published
online April 28, 2014; doi:10.1001/jamainternmed.2014.1053: E2. On the con-
tinuing controversy, see Alexandra Sifferlin, “Do Depression Drugs Still Need
Suicide Warnings?” Time.com, Nov. 10, 2104.
2. Allan Horwitz and Jerome Wakefield, The Loss of Sadness: How Psychiatry
Transformed Normal Sorrow into Depressive Disorder (New York: Oxford
University Press, 2007), p. 132. On mistaking cases presented to a doctor for
cases in the community, see Eliot Freidson, Profession of Medicine (New York:
Dodd, Mead, 1970), pp. 269–73.
3. Nima Sharifi and Barnett Kramer, “Screening for Prostate Cancer: Current
Status and Future Prospects,” American Journal of Medicine 120 (2007): 743.
4. Simon Gilbody, Trevor Sheldon, and Simon Wessely, “Should We Screen for
Depression?” BMJ 332 (2006): 1027.
5. Steven Woolf, “Screening for Prostate Cancer with Prostate-Specific Antigen,”
New England Journal of Medicine 333 (1995): 1402.
6. William Catalona, “Screening for Prostate Cancer: Enthusiasm,” Urology 42
(1993): 113–15.
7. William Black, “Overdiagnosis: An Underrecognized Cause of Confusion and
Harm in Cancer Screening,” Journal of the National Cancer Institute 92 (2000):
1281.
8. Arthur Barsky and Jonathan Borus, “Functional Somatic Syndromes,” Annals
of Internal Medicine 130 (1999): 912.
9. Most depression is in fact occasioned by circumstances. See David Clarke,
“Depression, Demoralization, and Psychotherapy in People Who Are Medi-
cally Ill,” in The Psychotherapy of Hope: The Legacy of Persuasion and Heal-
ing, eds. Renato Alarcón and Julia Frank (Baltimore: Johns Hopkins University
Press, 2012), p. 128. On the circumstantiality of medical judgment, see Stephen
Toulmin, “How Medicine Saved the Life of Ethics,” Perspectives in Biology and
Medicine 25 (1982): 742.
10. Charles Cornford, Angela Hill, and Joe Reilly, “How Patients with Depressive
Symptoms View Their Condition: A Qualitative Study,” Family Practice 24
(2007): 363.
11. Richard Kravitz, Ronald Epstein, and Mitchell Feldman, “Influence of Patients’
Requests for Direct-to-Consumer Advertised Antidepressants,” JAMA 293
(2005): 1995–2002.
12. M. Drury, The Danger of Words (New York: Humanities Press, 1973), p. 22.
NOTES 253

13. David Brody, Steven Hahn, and Robert Spitzer, “Identifying Patients with
Depression in the Primary Care Setting: A More Efficient Method,” Archives of
Internal Medicine 158 (1998): 2469–75.
14. See Joel Smith, “Depression: Darker Than Darkness,” American Scholar 66
(1997): 495–99 for a strong argument that actual depression entails a radical
reduction of energy, an also radical reduction in enthusiasm for living, a loss
of hope and corresponding preoccupation with death, and self-loathing. What
DSM refers to as “depressed mood” is an almost euphemistic description of
the third.
15. Wayne Katon and Herbert Schulberg, “Epidemiology of Depression in Primary
Care,” General Hospital Psychiatry 14 (1992): 244.
16. On incipient risk, see Joseph Dumit, Drugs for Life: How Pharmaceutical Com-
panies Define Our Health (Durham: Duke University Press, 2012).
17. Robert Spitzer and Jerome Wakefield, “DSM-IV Diagnostic Criterion for Clin-
ical Significance: Does It Help Solve the False Positive Problem?” American
Journal of Psychiatry 156 (1999): 1859.
18. See Robert Spitzer, Jean Endicott, and Eli Robins, “Research Diagnostic Cri-
teria: Rationale and Reliability,” Archives of General Psychiatry 35 (1978): 777:
“Whereas the Feighner criteria required an acknowledged dysphoric mood,
the criteria for major depressive disorder accept as an alternative the pres-
ence of a pervasive loss of interest or pleasure. This was done with the clinical
recognition that many patients with an obvious depressive syndrome do not
acknowledge feeling depressed.”
19. For an argument that you can commit suicide more or less unknowingly, see A.
Alvarez, The Savage God: A Study of Suicide (New York: Norton, 1990), p. 155.
20. Aaron Beck, Gary Brown, Robert Steer et al., “Differentiating Anxiety and
Depression: A Test of the Cognitive Content-Specificity Hypothesis,” Journal
of Abnormal Psychology 96 (1987): 179–83.
21. Michael Peterson, John Holbrook, De Von Hales et al., “Contributions of the
History, Physical Examination, and Laboratory Investigation in Making Medi-
cal Diagnoses,” Western Journal of Medicine 156 (1992): 164.
22. Aaron Beck as cited in Robyn Dawes, A House of Cards: Psychology and Psycho-
therapy Built on Myth (New York: Free Press, 1994), p. 284.
23. Edward Shorter, How Everyone Became Depressed: The Rise and Fall of the
Nervous Breakdown (Oxford: Oxford University Press, 2013), p. 189.
24. Kurt Kroenke, Robert Spitzer, Janet Williams et al., “Physical Symptoms in Pri-
mary Care: Predictors of Psychiatric Disorders and Functional Impairment,”
Archives of Family Medicine 3 (1994): 778.
25. Larry Goldman, Nancy Nielsen, and Hunter Champion, “Awareness, Diag-
nosis, and Treatment of Depression,” Journal of General Internal Medicine 14
(1999): 575.
26. F. Dudley Hart, “The Importance of Non-Disease,” The Practitioner 211 (1973):
194.
27. Michael King, Victoria Holt, and Irwin Nazareth, “Women’s Views of Their
Sexual Difficulties: Agreement and Disagreement with Clinical Diagnoses,”
Archives of Sexual Behavior 36 (2007): 281–88.
254 NOTES

28. Cf. Trisha Greenhalgh, How to Read a Paper: The Basics of Evidence-Based
Medicine (Oxford: BMJ Books, 2010), p. 140.
29. Cf. Joanna Moncrieff, The Myth of the Chemical Cure: A Critique of Psychiatric
Drug Treatment (New York: Palgrave Macmillan, 2008), p. 235.
30. Jeffrey Pyne, Kathryn Rost, Farah Farahati et al., “One Size Fits Some: The
Impact of Patient Treatment Attitudes on the Cost-Effectiveness of a Depres-
sion Primary-Care Intervention,” Psychological Medicine 35 (2005): 842.
31. Horwitz and Wakefield, Loss of Sadness, p. 146.
32. Gilbody, Sheldon, Wessely, “Should We Screen for Depression?”: 1028.
33. D. L. Rosenhan, “On Being Sane in Insane Places,” Science 179 (1973): 253.
34. Robert Spitzer, “On Pseudoscience in Science, Logic in Remission, and Psy-
chiatric Diagnosis: A Critique of Rosenhan’s ‘On Being Sane in Insane Places,’”
Journal of Abnormal Psychology 84 (1975): 448. On the tendentiousness of
Freudian interpretation, see M. Drury, The Danger of Words (New York:
Humanities Press, 1973), p. 17.
35. Interview with the author in Christopher Lane, Shyness: How Normal Behavior
Became a Sickness (New Haven: Yale University Press, 2007), p. 77. Cf. Wor-
thington Hooker, Lessons from the History of Medical Delusions (New York:
Baker and Scribner, 1850), p. 36.
36. Catalona, “Screening for Prostate Cancer: Enthusiasm”: 114.
37. Otis Brawley and Barnett Kramer, “Cancer Screening in Theory and Practice,”
Journal of Clinical Oncology 23 (2005): 298.
38. Marc Theoret, Yang-Min Ning, Jenny Zhang et al., “The Risks and Benefits of
5α-Reductase Inhibitors for Prostate-Cancer Prevention,” New England Journal
of Medicine 365:2 (2011): 99.
39. Marcus Reidenberg and David Lowenthal, “Adverse Nondrug Reactions,” New
England Journal of Medicine 279 (1968): 679.
40. Howard Parnes, Ian Thompson, and Leslie Ford, “Prevention of Hormone-
Related Cancers: Prostate Cancer,” Journal of Clinical Oncology 23 (2005): 374.
41. Naomi Breslau and Ronald Kessler, “The Stressor Criterion in DSM-IV Post-
traumatic Stress Disorder: An Empirical Investigation,” Biological Psychiatry 50
(2001): 699–704.
42. Shorter, How Everyone Became Depressed, p. 193.
43. Cited in Ben Goldacre, Bad Pharma: How Drug Companies Mislead Doctors
and Harm the Public (New York: Faber and Faber, 2012), p. 259.
44. Peter Albertsen, “What Is the Risk Posed by Prostate Cancer?” JNCI Mono-
graphs 45 (2012): 169–74.
45. Allison Glass, Matthew Cooperberg, Maxwell Meng et al., “Role of Active Sur-
veillance in the Management of Localized Prostate Cancer,” JNCI Monographs
45 (2012): 204.
46. Alexandre Zlotta, Shin Egawa, Dmitry Pushkar et al., “Prevalence of Prostate
Cancer on Autopsy: Cross-Sectional Study on Unscreened Caucasian and
Asian Men,” JNCI 105 (2013): 1050–58.
47. Dr. William Catalona as cited in The Economist, March 8, 2014.
48. Laura Esserman and Ian Thompson, “Solving the Overdiagnosis Dilemma,”
JNCI 102 (2010): 582.
NOTES 255

49. Frederick Crews, “Talking Back to Prozac,” New York Review of Books, Dec,
6, 2007.
50. Horwitz and Wakefield, Loss of Sadness, p. 135.
51. Kenneth Kendler, Rodrigo Muñoz, and George Murphy, “The Development of
the Feighner Criteria,” American Journal of Psychiatry 167 (2010): 136.
52. Kendler, Muñoz, Murphy, “The Development of the Feighner Criteria”: 140.
53. Spitzer, Endicott, Robins, “Research Diagnostic Criteria: Rationale and Reli-
ability”: 777.
54. Irving Kirsch, The Emperor’s New Drugs: Exploding the Antidepressant Myth
(New York: Basic, 2010), pp. 29, 48, 50.
55. See DSM-V, p. 811.
56. According to later calculations, “To prevent one death from prostate cancer . . .
1055 men would need to be invited for screening and 37 cancers would need to
be detected.” Fritz Schröder, Jonas Hugosson, Monique Roobol et al., “Prostate-
Cancer Mortality at 11 Years of Follow-up,” New England Journal of Medicine
366 (2012): 981. A 2014 update of ERSPC concluded that “further quantifica-
tion of harms and their reduction are still considered a prerequisite for the
introduction of populated-based screening.” At this point mass screening had
already been in effect for 20 years in the United States. The Lancet, Early Online
Publication, August 7, 2014; doi:10.1016/S0140-6736(14)60525-0.
57. See the Foreword by Robert Spitzer, MD, to The Loss of Sadness.
58. Ian Thompson, Phyllis Goodman, Catherine Tangen et al., “The Influence of
Finasteride on the Development of Prostate Cancer,” New England Journal of
Medicine 349 (2003): 215–24.
59. Goldman, Nielsen, and Champion, “Awareness, Diagnosis, and Treatment of
Depression,”: 572.
60. Horwitz and Wakefield, Loss of Sadness, p. 145. On taking diagnosis to the peo-
ple, see also David Healy, Pharmageddon (Berkeley: University of California
Press, 2012), p. 6.
61. See http://suicide.com/suicidecrisiscenter/whylive.html.
62. William Catalona, “Informed Consent for Prostate-Specific Antigen Screen-
ing,” Urology 61 (2003): 18.
63. Amir Qaseem, Michael Barry, Thomas Denberg et al., “Screening for Prostate
Cancer: A Guidance Statement from the Clinical Guidelines Committee of the
American College of Physicians,” Annals of Internal Medicine online publica-
tion 04/08/13.
64. David Ransohoff, Mary McNaughton Collins, and Floyd Fowler, “Why Is Pros-
tate Cancer Screening So Common When the Evidence Is So Uncertain? A
System without Negative Feedback,” American Journal of Medicine 113 (2002):
663–67.
65. Steven Woloshin and Lisa Schwartz, “The U. S. Postal Service and Cancer Screen-
ing: Stamps of Approval?” New England Journal of Medicine 340 (1999): 886.
66. Lane, Shyness, p. 70.
67. Horwitz and Wakefield, Loss of Sadness, p. 150.
68. Joan Bloom and Susan Monterossa, “Hypertension Labeling and Sense of Well-
Being,” American Journal of Public Health 71 (1981): 1228–32.
256 NOTES

69. See, e.g., Goldman, Nielsen, and Champion, “Awareness, Diagnosis, and
Treatment of Depression,”: 570.
70. Horwitz and Wakefield, Loss of Sadness, p. 149.
71. Stewart Justman, “Uninformed Consent: Mass Screening for Prostate Cancer,”
Bioethics 26 (2012): 143–48.
72. The favored term is now “active surveillance.”
73. Stewart Justman, “How Did the PSA System Arise?” Journal of the Royal Society
of Medicine 103 (2010): 309–12.
74. Barron Lerner, The Breast Cancer Wars (Oxford: Oxford University Press
2001), p. 48.
75. Jennifer Croswell, David Ransohoff, and Barnett Kramer, “Principles of Cancer
Screening: Lessons from History and Study Design Issues,” Seminars in Oncol-
ogy 37 (2010): 208.
76. Lydia Pace and Nancy Keating, “A Systematic Assessment of Benefits and Risks
to Guide Breast Cancer Screening Decisions,” JAMA 311 (2014): 1332.
77. David Newman, “Screening for Breast and Prostate Cancers: Moving Toward
Transparency,” JNCI 102 (2010): 1008–11. For an exception see Anna Bill-
Axelson, Lars Holmberg, Mirja Ruutu et al., “Radical Prostatectomy versus
Watchful Waiting in Early Prostate Cancer,” New England Journal of Medicine
352 (2005): 1977–84; and the follow-up article in NEJM 364 (2011): 1708–17.
78. Jane Wardle and Rosemary Pope, “The Psychological Costs of Screening for
Cancer,” Journal of Psychosomatic Research 36 (1992): 612. Some believe radia-
tion therapy for mammography-detected cancers may contribute to cardiovas-
cular mortality.
79. Otis Brawley, How We Do Harm: A Doctor Breaks Ranks about Being Sick in
America (New York: St. Martin’s, 2011), chapters 20–21.
80. Richard McNally, Richard Bryant, and Anke Ehlers, “Does Early Psychological
Intervention Promote Recovery from Posttraumatic Stress?” Psychological Sci-
ence in the Public Interest 4 (2003): 46.
81. Peter Ditto and Robert Croyle, “Understanding the Impact of Risk Factor
Test Results: Insights from a Basic Research Program,” in Psychosocial Effects
of Screening for Disease Prevention and Detection, ed. Robert Croyle (Oxford:
Oxford University Press, 1995), p. 160.
82. FDA Briefing Document, Oncologic Drugs Advisory Committee Meeting,
December 1, 2010: 28, 33.
83. Thompson, Goodman, Tangen et al., “The Influence of Finasteride on the
Development of Prostate Cancer”: 217.
84. Brawley, How We Do Harm, p. 229.
85. Gilbody, Sheldon, Wessely, “Should We Screen for Depression?”: 1028.
86. Carol Roeloffs, Cathy Sherbourne, Jürgen Unützer et al., “Stigma and Depres-
sion among Primary Care Patients,” General Hospital Psychiatry 25 (2003):
311–15. In a British study that looked for evidence that patients on antidepres-
sants suffered from real or imagined stigma, 70 percent declined to participate.
See Sara Garfield, Felicity Smith, and Sally-Anne Francis, “The Paradoxical
Role of Antidepressant Medication—Returning to Normal Functioning While
Losing the Sense of Being Normal,” Journal of Mental Health 12 (2003): 521–35.
NOTES 257

87. Dawes, House of Cards, p. 292.


88. “If you give patients complete and unbiased information about the likely effects
of an intervention they may well say no to it.” Fiona Godlee, “Less Medicine Is
More,” BMJ 338 (2009): b2561.
89. Vivien Hunot, Rob Horne, Morven Leese et al., “A Cohort Study of Adherence
to Antidepressants in Primary Care: The Influence of Antidepressant Concerns
and Treatment Preferences,” Primary Care Companion to the Journal of Clinical
Psychiatry 9 (2007): 91–99. While the authors take it for granted that patients
who were prescribed antidepressants were actually depressed, of the two “typi-
cal” patients they discuss, one is in shock following the sudden death of her
mother two weeks ago.
90. Alasdair Breckenridge, “Treating Mild Hypertension,” British Medical Journal
291 (1985): 89–90.
91. David LeCouteur, Jenny Doust, Helen Creasey et al., “Political Drive to Screen
for Pre-Dementia: Not Evidence Based and Ignores the Harms of Diagnosis,”
BMJ 347 (2013): f5125; doi:10.1136/bmj.f5125. Cf. Malaz Boustani, Anthony
Perkins, Chris Fox et al., “Who Refuses the Diagnostic Assessment for Demen-
tia in Primary Care?” International Journal of Geriatric Psychiatry 21 (2006):
556–63; and Malaz Boustani, Christopher Callahan, Frederick Unverzagt et al.,
“Implementing a Screening and Diagnosis Program for Dementia in Primary
Care,” Journal of General Internal Medicine 20 (2005): 572–77. On a blood test
that supposedly predicts the onset of mild cognitive impairment, but of which
two-thirds of the positives would be false, see “Researchers Claim Blood Tests
Predict Alzheimer’s,” MedPage Today, March 9, 2014. Note the confusing iden-
tification of mild cognitive impairment with full-blown Alzheimer’s disease.
92. Renate Schober and J. Michael Lacroix, “Lay Illness Models in the Enlight-
enment and the 20th Century: Some Historical Lessons,” in Mental Represen-
tation in Health and Illness, eds. J. A. Skelton and Robert Croyle (New York:
Springer-Verlag, 1991), p. 13. On the gulf between the number of people with
ailments of one kind or another and the number who seek medical care, see
also Irving Zola, “Pathways to the Doctor—From Person to Patient,” Social Sci-
ence and Medicine 7 (1973): 677–89.
93. Derek Summerfield, “Proposals for Massive Expansion of Psychological Thera-
pies Would Be Counterproductive across Society,” British Journal of Psychiatry
192 (2008): 326.
94. Susan McPherson and David Armstrong, “Social Determinants of Diagnostic
Labels in Depression,” Social Science and Medicine 62 (2006): 50–58.
95. Kathryn Rost, G. Richard Smith, Daryl Matthews et al., “The Deliberate Mis-
diagnosis of Major Depression in Primary Care,” Archives of Family Medicine 3
(1994): 333–37.
96. David Goldberg, Greg Simon, and Gavin Andrews, “Psychiatric Diagnosis
and Classification in Primary Care,” in Psychiatric Diagnosis and Classifica-
tion, eds. Mario Maj, Wolfgang Gaebel, Juan José López-Ibor et al. (New York:
John Wiley, 2002), p. 221. On the failure of UK doctors to diagnose depression
because they tend to agree with their patients, see also David Kessler, Keith
Lloyd, Glyn Lewis et al., “Cross Sectional Study of Symptom Attribution and
258 NOTES

Recognition of Depression and Anxiety in Primary Care,” BMJ 318 (1999):


436–40.
97. Goldman, Nielsen, and Champion, “Awareness, Diagnosis, and Treatment of
Depression,”: 575.
98. Allan Frances, Saving Normal: An Insider’s Revolt against Out-of-Control Psy-
chiatric Diagnosis, DSM-V, Big Pharma, and the Medicalization of Ordinary Life
(New York: William Morrow, 2013), p. xv.
99. K. B. Thomas, “General Practice Consultations: Is There Any Point in Being
Positive?” BMJ 294 (1987): 1200–1202. Cf. the argument that diagnostic habits
make it easier to diagnose disease than nondisease, in A. J. Scott, “Diagnos-
tic Accuracy Would Be Improved by Developing More Categories of ‘Non-
Disease,’” Medical Hypotheses 3 (1977): 135–37.

Chapter 7

1. A version of this chapter appeared as “The Folly of Systems: The Satiric Tradi-
tion and Mental Disorders,” Philosophy and Literature 37 (2013): 472–85.
2. John Helzer and Lee Robins, “The Diagnostic Interview Schedule: Its Develop-
ment, Evolution, and Use,” Social Psychiatry and Psychiatric Epidemiology 23
(1988): 15.
3. On DSM-III as a paradigm shift, see Hannah Decker, The Making of DSM-III:
A Diagnostic Manual’s Conquest of American Psychiatry (Oxford: Oxford Uni-
versity Press, 2013), p. 309f.
4. The Standard Edition of the Complete Psychological Works of Sigmund Freud
(London: Hogarth Press, 1953): 21, 115. See also my “Freud and His Nephew,”
Social Research 61 (1994): 457–76. Cf. Lionel Trilling, Sincerity and Authentic-
ity (Cambridge, MA: Harvard University Press, 1971), p. 151. Trillling’s son has
reported that in his private life Trilling “never hoped for glamorous insights or
a decisive cure” from psychoanalysis, only for some responsible reconciliation
with reality. James Trilling, “My Father and the Weak-Eyed Devils,” American
Scholar, Spring 1999: 17.
5. Thomas Kuhn, The Structure of Scientific Revolutions (Chicago: University of
Chicago Press, 1970), p. 24.
6. The revolution that installed DSM-III might be compared to the revolution that
enshrined the new linguistic philosophy and with it “a specialized set of prob-
lems, methods and techniques. Thanks to Moore, Russell and Wittgenstein, the
authors were saying, we are now ‘real philosophers’ and can look scientists in
the eye . . . We have given ourselves a respectable academic job, on which we
can embark with confidence and industry.” Allan Janik and Stephen Toulmin,
Wittgenstein’s Vienna (Chicago: Ivan R. Dee, 1996), p. 259. DSM-III enabled
psychiatry to look medicine in the eye and gave it plenty to do.
7. Mitchell Wilson, “DSM-III and the Transformation of American Psychiatry: A
History,” American Journal of Psychiatry 150 (1993): 399–410.
8. Gerald Rosen, Robert Spitzer, and Paul McHugh, “Problems with the Post-
Traumatic Stress Disorder Diagnosis and Its Future in DSM-V,” British Journal
NOTES 259

of Psychiatry 192 (2008): 3. On the universality of trauma, see Adam Phillips,


Becoming Freud: The Making of a Psychoanalyst (New Haven: Yale University
Press, 2014), p. 105: “It is precisely the traumatized self—the traumatized self as
the normal, modern self, so to speak—that Freud is beginning to come to terms
with.”
9. Tracked by MedPage Today under the heading, ICD-10 Follies.
10. Esther Fischer-Homberger, “Eighteenth-Century Nosology and Its Survivors,”
Medical History 14 (1970): 398.
11. Robyn Dawes, A House of Cards: Psychology and Psychotherapy Built on Myth
(New York: Free Press, 1994), p. 67.
12. Nancy Andreasen, “DSM and the Death of Phenomenology in America: An
Example of Unintended Consequences,” Schizophrenia Bulletin 33 (2007): 111.
13. Robert Aronowitz, “When Do Symptoms Become a Disease?” Annals of Inter-
nal Medicine 134 (2001): 803–08.
14. Rosemary Basson, Rosemary McInnes, Mike Smith et al., “Efficacy and Safety
of Sildenafil Citrate in Women with Sexual Dysfunction Associated with
Female Sexual Arousal Disorder,” Journal of Women’s Health and Gender-Based
Medicine 11 (2002): 376.
15. Frances Quirk, Julia Heiman, Raymond Rosen et al., “Development of a Sexual
Function Questionnaire for Clinical Trials of Female Sexual Dysfunction,”
Journal of Women’s Health and Gender-Based Medicine 11 (2002): 278.
16. Barbara Henker and Carol Whalen, “Hyperactivity and Attention Deficits,”
American Psychologist 44 (1989): 216.
17. Dan Blazer cited in The Economist, May 18, 2013, p. 83.
18. “Recurrent Brief Anxiety and Depression,” Lancet 337 (1991): 586–87.
19. Walter Cassidy, Norris Flanagan, Marie Spellman, and Mandel Cohen, “Clinical
Observations in [sic] Manic-Depressive Disease,” JAMA 164 (1957): 1535–46.
20. Allan Horwitz and Jerome Wakefield, The Loss of Sadness: How Psychia-
try Transformed Normal Sorrow into Depressive Disorder (Oxford: Oxford
University Press, 2007), p. 135.
21. See Robert Spitzer, Kurt Kroenke, Janet Williams et al., “Validation and Utility
of a Self-Report Version of PRIME-MD,” JAMA 282 (1999): 1737–44.
22. David Brody, Steven Hahn, and Robert Spitzer, “Identifying Patients with
Depression in the Primary Care Setting: A More Efficient Method,” Archives of
Internal Medicine 158 (1998): 2469.
23. T. M. Luhrmann, Of Two Minds: An Anthropologist Looks at American Psychia-
try (New York: Vintage, 2001), p. 40.
24. Allan Frances, Saving Normal: An Insider’s Revolt against Out-of-Control Psy-
chiatric Diagnosis, DSM-V, Big Pharma, and the Medicalization of Ordinary Life
(New York: William Morrow, 2013), p. 154.
25. See the Foreword by Robert Spitzer to Horwitz and Wakefield, The Loss of
Sadness.
26. Robert Burton, The Anatomy of Melancholy. Three vols. in one. (New York:
New York Review Press, 2001), I.145–46.
27. Cf. Harry Stack Sullivan, The Psychiatric Interview (New York: W. W. Norton,
1954), p. 185.
260 NOTES

28. Burton, Anatomy of Melancholy, I.421.


29. Burton, Anatomy of Melancholy, I.408.
30. Bridget Gellert Lyons, Voices of Melancholy: Studies of Literary Treatments of
Melancholy in Renaissance England (New York: Norton, 1971), pp. 136–37.
31. Dan Blumhagen, “Hyper-Tension: A Folk Illness with a Medical Name,” Cul-
ture, Medicine and Psychiatry 4 (1980): 197–227.
32. Cassidy, Flanagan, Spellman, and Cohen, “Clinical Observation in [sic] Manic-
Depressive Disease.”
33. Steven Hyman, “The Diagnosis of Mental Disorders: The Problem of Reifica-
tion,” Annual Review of Clinical Psychology 6 (2010): 160.
34. David Goldberg, “The Heterogeneity of ‘Major Depression,’” World Psychiatry
10 (2011): 226–27.
35. On the DSM and its iterations, see Marcia Angell, “The Illusions of Psychiatry,”
New York Review of Books, July 14, 2011.
36. Frances, Saving Normal, p. 17.
37. DSM-V, p. 5.
38. N. Bodde, J. Brooks, G. Baker et al., “Psychogenic Non-Epileptic Seizures—
Diagnostic Issues: A Critical Review,” Clinical Neurology and Neurosurgery 111
(2009): 6.
39. Bodde, Brooks, Baker et al., “Psychogenic Non-Epileptic Seizures”: 7.
40. Kalman Applbaum, “Pharmaceutical Marketing and the Invention of the Med-
ical Consumer,” PLoS Medicine 3 (2006): e189; Jack Gorman and Justine Kent,
“SSRIs and SNRIs: Broad Spectrum of Efficacy Beyond Major Depression,”
Journal of Clinical Psychiatry 60; sup. 4 (1999): 33–38. Brisdelle—paroxetine—
is now marketed as a treatment for hot flashes.
41. “Whenever one therapy is used to treat many different disorders, it is likely
that the therapeutic effects are due to the placebo effect.” Arthur Shapiro and
Elaine Shapiro, The Powerful Placebo: From Ancient Priest to Modern Physician
(Baltimore: Johns Hopkins University Press, 1997), p. 104.
42. See Sydney Walker, A Dose of Sanity: Mind, Medicine, and Misdiagnosis (New
York: Wiley, 1996), p. 78.
43. Fabrizio Benedetti, Placebo Effects: Understanding the Mechanisms in Health
and Disease (Oxford: Oxford University Press, 2009), p. 130.
44. Ramin Mojtabai and Mark Olfson, “Proportion of Antidepressants Prescribed
without a Psychiatric Diagnosis Is Growing,” Health Affairs 30 (2011): 1434–42.
45. Frances Abbott and Mary Fraser, “Use and Abuse of Over-the-Counter
Analgesic Agents,” Journal of Psychiatry and Neuroscience 23 (1998): 13–34.
46. Allen Frances, comment on Robert Spitzer and Janet Williams, “Having a
Dream: A Research Strategy for DSM-IV,” in The Validity of Psychiatric Diag-
nosis, ed. Lee Robins and James Barrett (New York: Raven Press, 1989), p. 301.
47. Erasmus, The Praise of Folly and Other Writings, tr. Robert M. Adams (New
York: Norton, 1989), p. 9. In a kindred work of humanism, the Utopians don’t
make issues out of specific points of religion, philosophy, or especially law.
48. Erasmus, Praise of Folly, p. 75.
49. Herman Melville, Moby-Dick (New York: Norton, 1967), p. 122.
NOTES 261

50. Moby-Dick, p. 127.


51. Robert Alter, Pen of Iron: American Prose and the King James Bible (Princeton:
Princeton University Press, 2010), p. 76.
52. Moby-Dick, p. 12.
53. Burton, Anatomy of Melancholy, II.67.
54. David Healy, Pharmageddon (Berkeley: University of California Press, 2012),
p. 182. For an Asperger’s quiz see: http://www.aspergerstestsite.com/75/autism
-spectrum-quotient-aq-test/#.UZuZXb8YLJw.
55. According to Burton, or at least some of his authorities, “those countries which
use [physic] least live longest and are best in health.” Anatomy of Melancholy,
II.207.
56. E.g., Benedetti, Placebo Effects, p. 21.
57. Rabelais, Gargantua and Pantagruel, tr. M. A. Screech (London: Penguin,
2006), p. 572. Cf. Montaigne, “On Experience,” Complete Essays, p. 1235: “Ill-
nesses have their life and their limits.” Montaigne cites illnesses of his own that
waned in the course of nature: p. 1236.
58. Lynn Payer, Disease-Mongers: How Doctors, Drug Companies, and Insurers Are
Making You Feel Sick (New York: John Wiley, 1992), pp. 7–8. We do, though,
have the classic joke about the operation that was a success.
59. Allen Frances, Essentials of Psychiatric Diagnosis: Responding to the Challenge of
DSM-V (New York: Guilford Press, 2013), p. 10.
60. Pat Bracken, Philip Thomas, Sami Timimi et al., “Psychiatry Beyond the Cur-
rent Paradigm,” British Journal of Psychiatry 201 (2012): 432.
61. On the principle and practice of satiric excess, see Stewart Justman, The Springs
of Liberty: The Satiric Tradition and Freedom of Speech (Evanston: Northwestern
University Press, 1999).
62. James Joyce, Ulysses (Oxford: Oxford University Press, 1993), p. 402.
63. Northrop Frye, The Anatomy of Criticism (New York: Atheneum, 1967), p. 229.
64. Gary Saul Morson, Narrative and Freedom: The Shadows of Time (New Haven:
Yale University Press, 1994), p. 184.
65. Raymond La Charité, “The Relationship of Judgment and Experience in the
‘Essais’ of Montaigne,” Studies in Philology 67 (1970): 37.
66. Gary Saul Morson, “Prosaic Bakhtin: Landmarks, Anti-Intelligentsialism, and
the Russian Counter-Tradition,” Common Knowledge 2 (1993): 60.
67. Montaigne, “On Experience,” Complete Essays, tr. M. A. Screech (London:
Penguin, 2003), p. 1243.
68. Gary Saul Morson, Hidden in Plain View: Narrative and Creative Potentials in
‘War and Peace’ (Stanford: Stanford University Press, 1978), p. 172.
69. Payer, Disease-Mongers, p. 24; cf. Robert Aronowitz, “When Do Symptoms
Become a Disease?” Annals of Internal Medicine 134 (2001): 803–8. On the
emergence during Tolstoy’s lifetime of the view that different patients might
have the same disease, see Nicholas Christakis, Death Foretold: Prophecy and
Diagnosis in Medical Care (Chicago: University of Chicago Press, 1999), p. 6.
70. Harold Schefski, “Tolstoj’s Case against Doctors,” Slavic and East European
Journal 22 (1978): 569–73.
262 NOTES

71. Valeria Sobol, “Reading the Invisible: The Mind, the Body, and the Medical
Examiner in Lev Tolstoy’s Anna Karenina,” Studies in Slavic Cultures 2 (2001):
17. Among the presumed causes of tuberculosis around the time Tolstoy
wrote War and Peace were “depressive emotions.” See Susan Sontag, Illness as
Metaphor and AIDS and Its Metaphors (New York: Picador, 1989), p. 54. The
antituberculosis drug iproniazid was in fact the first antidepressant; see Joanna
Moncrieff, The Myth of the Chemical Cure: A Critique of Psychiatric Drug Treat-
ment (New York: Palgrave Macmillan, 2008), pp. 121–24.
72. Leo Tolstoy, War and Peace, tr. Louise and Aylmer Maude (Oxford: Oxford
University Press, 1991), pp. 615, 617.
73. Lee Robins, “Diagnostic Grammar and Assessment: Translating Criteria into
Questions,” Psychological Medicine 19 (1989): 67.
74. Gary Saul Morson, “The Prosaics of Process,” Literary Imagination 2 (2000): 387.
75. Cf. Payer, Disease-Mongers, ch. 9.
76. Leslie Aaron and Dedra Buchwald, “A Review of the Evidence for Overlap
among Unexplained Clinical Conditions,” Annals of Internal Medicine 134
(2001): 877.
77. John Talbott, “An In-Depth Look at DSM-III: An Interview with Robert
Spitzer,” Hospital and Community Psychiatry 31 (1980): 28. Cf. William James,
Writings 1902–1910 (New York: Library of America, 1988), p. 138: “Most cases
are mixed cases, and we should not treat our classifications with too much
respect.” A turgid analysis of the difficulty of fitting things into categories is to
be found in Geoffrey Bowker and Susan Leigh Star, Sorting Things Out: Clas-
sification and Its Consequences (Cambridge, MA: MIT Press, 2000).
78. Allan Horwitz, Creating Mental Illness (Chicago: University of Chicago Press,
2002), p. 116.
79. It thus makes sense to ask whether the results of clinical trials run in one coun-
try necessarily apply to another, and whether “patients diagnosed with depres-
sion in China [are] really the same as patients diagnosed with depression in
California.” Ben Goldacre, Bad Pharma: How Drug Companies Mislead Doctors
and Harm the Public (New York: Faber and Faber, 2012), p. 115.
80. James Ferguson, “SSRI Antidepressant Medications: Adverse Effects and Toler-
ability,” Primary Care Companion to the Journal of Clinical Psychiatry 3 (2001):
22–27.
81. David Baldwin and Thomas Foong, “Antidepressant Drugs and Sexual
Dysfunction,” British Journal of Psychiatry 202 (2013): 397. The authors con-
tinue, “The presence of antidepressant treatment-emergent sexual dysfunction
can significantly reduce quality of life and self-esteem, and impose burdens on
interpersonal relationships, over and above those associated with depression.”
82. Edward Shorter, From Paralysis to Fatigue: A History of Psychosomatic Illness in
the Modern Era (New York: Free Press, 1992).
83. Simon Wessely, “Old Wine in New Bottles: Neurasthenia and ‘ME,’” Psychologi-
cal Medicine 20 (1990): 47.
84. John Feighner, Eli Robins, and Samuel Guze, “Diagnostic Criteria for Use in
Psychiatric Research,” Archives of General Psychiatry 26 (1972): 62.
NOTES 263

85. A brilliant 1983 review of Ann Beattie’s fiction sets its tone as “cool sorrow”
and “listless despair.” “Her parched, exhausted stories themselves seem numb.
She reads them herself in a plain, flat, utterly toneless voice that suggests dead-
ened feelings or, on occasion, a determined effort to fight back tears.” Here
then is a world depressed. The characters take Valium. See Pico Iyer, “The
World According to Beattie,” Partisan Review 50 (1983): 548–53. So popular
was Valium that by the mid-1970s it was used generically for drugs of its kind.
See Nikolas Rose, “Neurochemical Selves,” Society 41 (2003): 49.
86. David Healy, “The Dilemmas Posed by New and Fashionable Treatments,”
Advances in Psychiatric Treatment 7 (2001): 324.
87. Healy, Pharmageddon, pp. 32–33. For a hypothetical case that would have
read as anxiety in the 1960s and depression in the 1990s, see p. 260.
88. Edward Shorter, How Everyone Became Depressed: The Rise and Fall of the
Nervous Breakdown (Oxford: Oxford University Press, 2013), pp. 110, 119; cf.
Christopher Dowrick, Beyond Depression: A New Approach to Understand-
ing and Management (Oxford: Oxford University Press, 2009), pp. 67–68, and
David Pilgrim and Richard Bentall, “The Medicalisation of Misery: A Critical
Realist Analysis of the Concept of Depression,” Journal of Mental Health 8
(1999): 261–74.
89. Ferguson, “SSRI Antidepressant Medications.”
90. Bernd Löwe, Robert Spitzer, Janet Williams et al., “Depression, Anxiety and
Somatization in Primary Care: Syndrome Overlap and Functional Impair-
ment,” General Hospital Psychiatry 30 (2008): 191–92.
91. David Lodge, Therapy (London: Penguin, 1995). See pp. 4, 218, 107, etc.
92. Dickens, Little Dorrit (Oxford: Oxford University Press, 1967), p. 627.
93. Dickens, Little Dorrit, p. 203.
94. Dickens, Little Dorrit, p. 206.
95. Dickens, Little Dorrit, p. 641.
96. See Stewart Justman, “Direct and Indirect Guilt in Little Dorrit,” Soundings,
Spring-Summer 2002: 39–52.
97. B. C. Douglas, “Dickens’ Characters on the Couch: An Example of Teaching
Psychiatry Using Literature,” Medical Humanities 34 (2008): 64–69.
98. Horace Dobell, Lectures on the Germs and Vestiges of Disease, and on the
Prevention of the Invasion and Fatality of Disease by Periodical Examinations
(London: John Churchill, 1861), p. 150.
99. Jennifer Croswell, David Ransohoff, and Barnett Kramer, “Principles of Can-
cer Screening: Lessons from History and Study Design Issues,” Seminars in
Oncology 37 (2010): 202.
100. Nortin Hadler, Worried Sick: A Prescription for Health in an Overtreated
America (Chapel Hill: University of North Carolina Press, 2008), p. 135.
101. Herb Kutchins and Stuart Kirk, Making Us Crazy: DSM: The Psychiatric Bible
and the Creation of Mental Disorders (New York: Free Press, 2003), p. x.
102. Michael King, Victoria Holt, and Irwin Nazareth, “Women’s Views of Their
Sexual Difficulties: Agreement and Disagreement with Clinical Diagnoses,”
Archives of Sexual Behavior 36 (2007): 281–88.
264 NOTES

103. Nancy Andreasen, “Acute and Delayed Posttraumatic Stress Disorders: A His-
tory and Some Issues,” American Journal of Psychiatry 161 (2004): 1321–23.
104. Jonathan Shay, Odysseus in America: Combat Trauma and the Trials of Home-
coming (New York: Scribner, 2002), p. 141. If Odysseus really suffered from
PTSD, the wound he receives in Book 11 of the Iliad would be mentioned
somewhere in the Odyssey. It isn’t.
105. Montaigne, “Apology for Raymond Sebond,” in Complete Essays, p. 662.
106. For the same reason, but also because it pretends cultural omniscience, the
DSM-V claim that “ADHD occurs in most cultures in about 5% of children”
falls to the ground.
107. Richard McNally, “Progress and Controversy in the Study of Posttraumatic
Stress Disorder,” Annual Reviews in Psychology 54 (2003): 230.
108. McNally, “Progress and Controversy in the Study of Posttraumatic Stress Dis-
order”: 232. DSM-V excludes the diagnosis of PTSD in someone who neither
suffered or witnessed trauma nor learned that someone closely connected
suffered trauma. Ruled out is “exposure through electronic media, television,
movies, or pictures, unless this exposure is work related.”
109. W. H. M. Castro, M. Schilgen, S. Meyer et al., “Do ‘Whiplash Injuries’ Occur
in Low-Speed Rear Impacts?” European Spine Journal 6 (1997): 374.
110. Paul Lees-Haley, J. Randall Price, and Christopher Williams, “Use of the Impact
of Events Scale in the Assessment of Emotional Distress and PTSD May Pro-
duce Misleading Results,” Journal of Forensic Neuropsychology 2 (2001): 49.
111. Ian Hacking, Mad Travelers: Reflections on the Reality of Transient Mental Ill-
nesses (Cambridge: Harvard University Press, 1998), p. 83.
112. David Healy, “Mandel Cohen and Origins of the Diagnostic and Statistical
Manual of Mental Disorders, Third Edition: DSM-III,” History of Psychiatry
13 (2002): 210–11.

Chapter 8

1. Dostoevsky, Notes from the Underground, tr. Jane Kentish (Oxford: Oxford Uni-
versity Press, 1991), p. 12. Subsequent quotations from pp. 45, 47, 50, 51, 77.
2. M. M. Bakhtin, Problems of Dostoevsky’s Poetics, tr. Caryl Emerson (Minne-
apolis: University of Minnesota Press, 1984), p. 59.
3. Notes from the Underground, p. 10.
4. Notes from the Underground, p. 13.
5. See e.g., Witold Rybczynski, How Architecture Works: A Humanist’s Toolkit
(New York: Farrar, Straus and Giroux, 2013), p. 224.
6. Nikolai Chernyshevsky, What Is to Be Done? tr. Michael Katz (Ithaca: Cornell
University Press, 1989), p. 370.
7. What Is to Be Done? p. 104.
8. What Is to Be Done? p. 313.
9. Notes from the Underground, p. 22.
10. What Is to Be Done? p. 378.
11. E.g., Ethan Watters, Crazy Like Us: The Globalization of the American Psyche
(New York: Free Press, 2010).
NOTES 265

12. David Foster Wallace, “The Depressed Person,” Harper’s Magazine, Jan.
1998, p. 64.
13. Gary Saul Morson, “Anna Karenina” in Our Time: Seeing More Wisely (New
Haven: Yale University Press, 2007), p. 158.
14. Richard Shusterman, “William James, Somatic Introspection, and Care of the
Self,” Philosophical Forum 36 (2005): 431.
15. Tolstoy, Anna Karenina, tr. Constance Garnett; rev. Leonard Kent and Nina
Berberova (New York: Modern Library, 1993), p. 289.
16. Morson, “Anna Karenina” in Our Time, p. 228.
17. Utopia, tr. Robert M. Adams (New York: Norton, 1975), pp. 59–60.
18. Arthur Barsky and Jonathan Borus, “Functional Somatic Syndromes,” Annals
of Internal Medicine 130 (1999): 910.
19. Notes from the Underground, p. 7.
20. Jon Stone, Wojtek Wojcik, Daniel Durrance et al., “What Should We Say to
Patients with Symptoms Unexplained by Disease? The ‘Number Needed to
Offend,’” BMJ 325 (2002): 1449–50.
21. Michael André Bernstein, Bitter Carnival: Ressentiment and the Abject Hero
(Princeton: Princeton University Press, 1992).
22. Elaine Showalter, Hystories: Hysterical Epidemics and Modern Media (New
York: Columbia University Press, 1997), p. 118.
23. Showalter, Hystories, pp. 122–23.
24. Showalter, Hystories, p. 126.
25. Watters, Crazy Like Us, e.g. p. 48: “As the public became aware that anorexia
was in the symptom pool, local clinicians . . . noticed an increase in cases of
eating disorders.”
26. Nortin Hadler, “Fibromyalgia, Chronic Fatigue, and Other Iatrogenic Diagnos-
tic Algorithms,” Postgraduate Medicine 102 (1997): 162.
27. Simon Wessely, “Old Wine in New Bottles: Neurasthenia and ‘ME,’” Psychologi-
cal Medicine 20 (1990): 36.
28. Wessely, “Old Wine in New Bottles.”
29. Arthur Shapiro and Elaine Shapiro, The Powerful Placebo: From Ancient
Priest to Modern Physician (Baltimore: Johns Hopkins University Press, 1997),
p. 77.
30. On syndromes that challenge medicine, see R. S. Ferguson, “The Doctor-
Patient Relationship and ‘Functional’ Illness,” in Patients, Physicians and Ill-
ness, ed. E. Gartly Jaco (Glencoe, IL: Free Press, 1958), p. 435: patients with
psychosomatic and functional illness “try us at our weakest point . . . Reliable
observers estimate that of all attendees at surgeries and clinics, anything from
25 to 50 percent are not suffering from any demonstrable pathological entity or
nosological syndrome.”

Epilogue

1. Robert Hahn, “Expectations of Sickness: Concept and Evidence of the Nocebo


Phenomenon,” in How Expectancies Shape Experience, ed. Irving Kirsch (Wash-
ington, DC: American Psychological Association, 1999), p. 351.
266 NOTES

2. Hans-Georg Gadamer, The Enigma of Health: The Art of Healing in a Scientific


Age, tr. Jason Gaiger and Nicholas Walker (Stanford: Stanford University Press,
1996), p. 156.
3. Gadamer, Enigma of Health, pp. 168, 109, 156.
4. Simon Wessely, “A Defence of the Randomized Controlled Trial in Mental
Health,” BioSocieties 2 (2007): 124.
5. Gadamer, Enigma of Health, pp. 89, 136, 42–43.
6. Gadamer, Enigma of Health, p. 114.
7. Gadamer, Enigma of Health, pp. 73, 113.
8. On endeavor and awareness, cf. Bernard MacKinnon, Seven Mourners: Depres-
sion and the Needs of Human Nature (Huntington, NY: Kroshka Books, 2000),
p. 41: “The athlete and the dancer must care deeply and try hard, but with a
relaxed intensity—a mode of being in which one loves both the activity and its
desired end and recognizes the impossibility of perfect control, while trusting
deeply in nature, including the nature of the self. A kind of self-forgetfulness is
required, a fine care-less-ness.”
9. Gordon Parker, “Is Depression Overdiagnosed? Yes,” BMJ 335 (2007): 328.
Interestingly, it seems to be the other way around with ADHD, with adults
claiming more over time. In a study that followed an ADHD population for
33 years, only 5.7 percent reported having ADHD at a mean age of 25, while
22.2 percent reported having it 41. Maybe the diagnosees were rescripting their
narrative to make ADHD the “cause” of the poor outcomes associated with
the diagnosis in this and other studies. See Rachel Klein, Salvatore Mannuzza,
María Ramos Olazagasti et al., “Clinical and Functional Outcomes of Child-
hood Attention-Deficit/Hyperactivity Disorder 33 Years Later,” Archives of
General Psychiatry 69 (2012): 1295–1303. According to the authors, a possible
explanation for the discrepant reports “may be greater awareness of ADHD
due to wide media coverage . . . It may be that the popularity of ADHD in the
media has fostered erroneous self-identification” (p. 1301).
10. Gadamer, Enigma of Health, pp. 112, 138.
11. Christina Dording, David Mischoulon, Timothy Petersen et al., “The Pharma-
cological Management of SSRI-Induced Side Effects: A Survey of Psychiatrists,”
Annals of Clinical Psychiatry 14 (2002): 143–47.
12. The Odyssey, tr. Richmond Lattimore (New York: HarperCollins, 1991).
13. See 19.551, for example.
14. In line 2 of Book 2 Telemachus is said to have awakened at dawn.
15. In effect, Odysseus sleeps like a hero, just as the Cyclops sleeps like the monster
he is, spewing human meat.
16. Gadamer, Enigma of Health, p. 96.
17. Gadamer, Enigma of Health, p. 114.
18. Fabrizio Benedetti, Placebo Effects: Understanding the Mechanisms in Health
and Disease (Oxford: Oxford University Press, 2009), pp. 32–34.
19. Cf. Stewart Justman, To Feel What Others Feel: Social Sources of the Placebo
Effect (San Francisco: University of California Medical Humanities Press,
2012), ch. 1.
NOTES 267

20. “In my opinion the most ordinary things, the most commonplace and best-
known, can constitute, if we know how to present them in the right light, the
greatest of Nature’s miracles and the most amazing of examples, notably on the
subject of human actions.” Montaigne, “On Experience” in Complete Essays, tr.
M. A. Screech (London: Penguin, 2003), pp. 1227–28.
21. Jerome Frank, “Psychotherapy as Rhetoric: Some Implications,” Clinical Psy-
chology: Science and Practice 2 (1995): 90.
22. Preface to the New York edition of Roderick Hudson (London: Penguin, 1986),
p. 37.
23. Kate Faasse and Keith Petrie, “The Nocebo Effect: Patient Expectations
and Medication Side Effects,” Postgraduate Medical Journal, doi:10.1136/
postgradmedj-2012-131730.
24. As noted in Chapter 1, Montaigne’s meditation “On the Power of the Imagina-
tion” investigates the imagination’s rule over mind and body while throwing
doubt on accounts of miracle cures. Montaigne tells of “a woman who believed
she had swallowed a pin in her bread” and was cured when a wise trickster
“made her vomit and secretly tossed a bent pin into what she had brought up”
(p. 117). The subplot of The Brothers Karamazov turns on the story of a dog that
snapped up a piece of bread with a pin stuck in it. The dog doesn’t die, but the
child who played the trick does. We are told that the sight of the dog as it ran
away squealing “haunted” the boy, that is, entered his imagination.
25. E.g., Franklin Miller and Ted Kaptchuk, “The Power of Context: Reconceptual-
izing the Placebo Effect,” Journal of the Royal Society of Medicine 101 (2008):
222–25.
Index

acupuncture, 31, 111 breast self-examination, 77–78


Adjustment Disorder, 57, 119, 146 Brothers Karamazov, The, 184, 236n96,
Anna Karenina, 140–41, 185, 200 267n24
Anorexia, 199, 204 Burton, Robert, 175–77, 180, 182
antidepressants, 6–8, 10, 13, 27–28,
33–34, 43, 49, 51–54, 78–9, 81, Carlyle, Thomas, 199
103–4, 119, 123, 39, 143–44, 147, Catalona, William, 158
150, 156, 180, 187–89, 209 Chaucer, Geoffrey, 183
antipsychiatry, 26, 97 Chekhov, Anton, 229n176
anxiety, 11, 17, 31, 41, 49, 61, 67, Chernyshevsky, Nikolai, 197–98, 205
77–78, 80, 83, 95, 133, 173, 179, Chronic Fatigue Syndrome, viii, 40–42,
188–91, 207 50, 62, 64, 96, 121, 129, 178, 186,
Arendt, Hannah, viii 203–5
Asperger’s syndrome, 75, 183 Cohen, Mandel, 9–11, 21, 193
Attention-deficit/Hyperactivity consent forms, 28, 60, 66, 76, 86–87,
Disorder (ADHD), 3, 6–7, 15–16, 117, 130, 158
21, 24, 29, 32, 44, 57–59, 77, 85, Consumption, 185
92, 97, 107–16, 133, 136, 172, 190, Critical Incident Stress Debriefing, 87,
209, 266n9 165, 208
Autism, 97, 163
awareness, 7, 31, 59–61, 63, 71, 75, 78, Dawes, Robyn, 172
84, 107, 117, 126–28, 134, 159–61, Death of Ivan Ilych, The, 140–41, 185
192, 198–200, 202, 204, 207–10 Dementia, 25, 29–30, 46, 166
Depression, ix, 1–37 passim, 40,
Bakhtin, M. M., 184, 196 42–45, 47, 49, 51–54, 58, 67, 69,
Bayer aspirin, 122 77, 97–106, 121, 137–38, 143–68
Beard, George, 128, 204 passim, 170, 173–74, 177, 179,
Benign prostatic hyperplasia (BPH), 190–92, 209
31, 116 Descartes, René, 139, 177
Berlin, Isaiah, 47 diagnosis threat, 15, 59, 111
Bernays, Edward, 126–27 diagnostic inflation, 3, 7–8, 18, 21, 25,
Bipolar Disorder, ix, 25–26, 68, 73, 97, 28, 30, 44–45, 57, 97–98, 155, 184
121–22 Dickens, Charles, 189–91
Brawley, Otis, 163 direct-to-consumer (DTC) advertising,
Breast cancer, 42–43, 67, 150, 158, 162 ix, 7, 14, 51, 62, 119, 161, 184
270 INDEX

Dissociative Identity Disorder, 136 112, 116–17, 128–29, 136, 144–46,


Dobell, Horace, 191 154–55, 160–63, 255n56
Dostoevsky, Fyodor, 108, 184, 195–205 Haygarth, John, 90
passim homosexuality, 68–70
Horwitz, Allan, 146, 157, 160–61, 164,
early detection, 13, 25, 30, 73, 128, 173–75, 186, 192, 196
143, 145, 152, 154, 156–59, 162, hypertension, 17, 23, 59–60, 107, 125,
190–91 129, 166, 177, 247n94
Epstein-Barr virus, 204
Erasmus, Desiderius, 180–81, 183–84 Illich, Ivan, 224n110
Erectile Dysfunction, 45, 116–18 Inferno, 186
expectation, 15, 18, 20–28, 53, 58, 60, International Classification of Diseases,
63–65, 69, 76, 87, 94–95, 97–98, 34, 171
111–13, 129–30 Irritable Bowel Syndrome, 41–42, 67,
121, 140, 152
Falconer, William, 90
false positives, 3, 57–58, 72, 102, 154, James, Henry, 213
160, 257n91 James, William, 39–40, 200, 209,
Feighner criteria, 4, 10, 47, 122, 155, 262n77
173, 188 Jopling, David, 74
Female Sexual Arousal Disorder, Joyce, James, 183–84, 229n176
172, 192
Fibromyalgia, viii, 41–42, 121, 132, Key opinion leaders, 126
152 King, Martin Luther, 159
finasteride, 31, 56, 116–18, 157 Koch, Robert, 34
Foucault, Michel, 56–57 Kraepelin, Emil, 8–10, 177
Frances, Allen, 3, 8, 16, 29, 47, 50–51, Kuhn, Thomas, 169–70
128, 134, 149, 174, 178–79, 184
Franklin, Benjamin, 89, 228–29n173 labels, 7, 12, 14, 16, 18, 22–26, 29, 44,
Freud, Sigmund, 2, 11, 149, 151, 59, 68, 75, 95–97, 107, 110, 116,
169–70 122, 128–33, 137, 146, 172, 205
Frye, Northrop, 184 Laing, R. D., 97
Functional Somatic Syndromes, 19, 67, Lasch, Christopher, 74–75
109–10, 131, 187, 202 Lasker, Mary, 127
Lavoisier, Antoine-Laurent de, 89
Gadamer, Hans-Georg, 207–9 Librium, 50–51, 180, 188
Generalized Anxiety Disorder, 7, 173 Little Dorrit (Dickens), 189–91
Gleason scale, 153–54 Locke, John, 115, 171
guilt, 20, 34, 47, 59, 105, 122, 174, 190 Lodge, David, 189

Hadler, Nortin, 132, 191 mammography, 42–43, 67, 78, 150, 162
Hamilton, Max, 9 medicalization, viii-ix, 12–14, 16, 24,
Hamilton scale, 9, 156 30–33, 43, 45–48, 50–51, 56,
harm, ix, 3, 12–17, 19, 22, 26–27, 46, 65–66, 70, 77, 79, 92, 128, 134,
49–56, 58, 60, 65, 87, 93, 96, 107, 145, 163, 191, 213
INDEX 271

melancholy, 36, 174–77, 180–82, 185 Post-concussive Syndrome, 12, 86,


Melville, Herman, 9, 175, 181–82 220n56
Mesmerism, 89–90 Post-traumatic Stress Disorder (PTSD),
Mild Traumatic Brain Injury, 15, 24, 19–20, 23, 35–37, 59, 87, 105, 164,
42, 85 170–71, 179, 190, 192–93
Miltown, 83 Praise of Folly, 180–81
Moby-Dick, 181–82, 184 Premenstrual Dysphoric Disorder, 6
Montaigne, Michel de, 29–31, 60, 118, Propecia, 117–18
139–40, 183–85, 193, 208, 213, Prostate cancer, 13, 42, 46, 49–50,
261n57, 267nn20, 24 55–56, 73, 143–68 passim
morphine, 129, 212 Prostate Cancer Prevention Trial
Multimodal Treatment Study of (PCPT), 42, 50, 56, 152, 157,
Children with ADHD (MTA), 164–65
28, 114 Prozac, 8, 10, 53, 92, 104, 121, 161, 189
Multiple Personality Disorder, 128, PSA (prostate-specific antigen), 56,
134–36, 190, 193 117, 128, 143–68 passim
Myalgic encephalomyelitis, 62, 96, 204 psychoanalysis, 1–2, 33, 139, 149, 223
Psychogenic Non-epileptic
nerves, 6, 10, 39, 41, 69, 177, 180, Seizures, 179
249n34 psychotherapy, 17, 20–21, 74, 105,
Neurasthenia, 40, 62, 128, 187, 204–5 134–36, 163, 208, 213
nocebo effect, viii, ix, 22–26, 31, 58–65, Psychotic Risk Syndrome, 72–73
77, 83–84, 86–87, 90–97, 99–100,
110, 113, 116–17, 123, 125, Rabelais, François, 183–84
129–33, 187, 193, 204, 214 Ritalin, 112, 209
Notes from the Underground, 195–205 Rosenhan, D. L., 24, 151
passim
Schizophrenia, 24, 73, 132, 151
Odyssey, The, 35, 192–93, 210–12 screening, 10, 13–14, 17, 28, 46, 50,
open placebos, 112–13, 190 55, 63, 73, 78, 84, 98–99, 106–7,
overdiagnosis, 3, 8, 13, 17, 24, 47, 127–29, 133–34, 143–68 passim
73–74, 93–119 passim, 145, Shakespeare, William, 35–37, 76, 156,
158–59, 161–62, 225n119 174, 176, 193, 228n169
Showalter, Elaine, 203
Parsons, Talcott, 44 Social Anxiety Disorder, ix, 3, 45, 78,
Paxil, 7, 49, 53, 82–83, 85, 126, 82–83, 126, 178, 195–96,
146, 188 201, 203
Pediatric Bipolar Disorder, 25 Socrates, vii–viii
Perkins tractor, 90 specificity, viii, 4, 6–8, 11, 14, 20,
placebo effect, 6–7, 11–12, 22–23, 43, 46, 49, 58–59, 121–23, 130,
28, 30, 41, 43, 45, 52, 60–61, 63, 154–56, 172
76–77, 84, 86, 89–97, 109, 111–14, Spitzer, Robert, 2–4, 8, 18, 21, 23,
121, 123–25, 129, 133, 139, 180, 69–70, 81, 102, 104, 106, 138–39,
183, 205, 214 147, 149, 151, 170, 174, 186,
Plato, vii, 47 189, 197
272 INDEX

SSRIs (selective serotonin reuptake US Preventive Services Task Force, 14,


inhibitors), 6, 12–13, 19, 44, 78, 98, 144
52–55, 58, 85, 104, 121, 123, 144, Ulysses, 183
179–80 Utopia, 201
stereotype threat, 110–11 utopianism, 43, 47–48, 169, 197, 201
suggestion, 16, 20–21, 28–29, 62,
74–76, 85, 93, 135, 214 Valium, 50, 188
suicide, 25, 29, 34–35, 40, 143, 148, Viagra, 116
158, 174 Vioxx, 58
Swift, Jonathan, 183–84, 233n48 voodoo death, 118
Sydenham, Thomas, 171
symptom amplification, 60–62, 64, 79, Wakefield, Jerome, 146, 157, 160–61,
81, 83, 105, 109, 124, 129–30 164, 173–75, 196
Wallace, David Foster, 199–200
Thomas, K. B., 22, 44, 94–96, War and Peace, 33–34, 140–42, 185–86
139, 168 Whiplash, 18, 44, 64–65, 108–9
Tolstoy, Leo, 33–35, 92, 108, 140–42, Wittgenstein, Ludwig, 35, 39, 140,
183–85, 207 220n58, 223n98, 229n176
Toulmin, Stephen, 32–33 Woolf, Virginia, 251n68

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