M.E. body, M.E.

brain: our new research

InterAction 87, Summer2014
After consulting with its members and supporters, Action for M.E. is pleased to announce that it is funding two new
biomedical research projects plus accepting management of a third project already underway.
Our first two projects were prioritised from a list of six potential projects following voting by Action for M.E. Supporting Members and
Research Appeal donors.
Sonya Chowdhury, CEO, Action for M.E. says, Thank-you to all those who voted for the project that they wanted us to prioritise. The
standard of applications we received from researchers was high, and these two studies will help us take a step closer to targeted
treatments for people with M.E./CFS. We are also working with two of the other teams that sent us applications and hope to make
further announcements later this year.

Mitochondrial DNA
The first study asks if people with M.E./CFS have different patterns of mitochondrial DNA variation compared to healthy people.
Dr Joanna Elson, Mitochondrial Research Group, Institute of Genetic Medicine, Newcastle University, will lead this 18-month mitochondrial
study. She explains: Mitochondria are the powerhouses of the cell, and mitochondrial DNA provides the codes for proteins that are
essential for energy production. We want to see if patients with M.E./CFS have different patterns of mitochondrial DNA variation that
could affect a persons chances of succumbing to M.E./CFS, or act as a barrier to recovery.
Action for M.E. will fund this 30,000 project, and would like to thank the ME Association for giving a 5,000 donation towards the cost.

Immune responses
The second study, costing 19,500, is co-funded jointly by Action for M.E. and the ME Association and looks at the role of immune
responses in M.E./CFS.
This 16-month study, led by Prof Stephen Todryk, Professor of Immunology, Department of Applied Sciences, Northumbria University,
will look at the way immune responses act, particularly against infections, in people with M.E./CFS.
Because many different known diseases also have fatigue as one of their symptoms, this suggests that several processes may come
into play to cause it, explains Prof Todryk. Uncontrolled immune responses appear to be important in fatigue, and infections thats
viruses, bacteria, fungi and parasites are major initiators of immune responses, some of which are associated with M.E./CFS.
Currently there is no single diagnostic test for M.E./CFS, or specific pharmaceutical treatment.
We want to work out if those immune responses can be used to diagnose M.E./CFS, and if they can be targeted for treatment, says
Prof Todryk, who plans to recruit patients from the Newcastle NHS M.E./CFS services to take part in the study.
Charles Shepherd, Medical Adviser, ME Association, says, We are delighted to be co-funding this new research study, and welcome Prof
Todryk to our research conference, co-hosted by M.E. North East, to talk about his work. This event takes place Tuesday 4 November,
Gosforth Civic Hall, Newcastle upon Tyne. Contact the ME Association (Tel: 01280 818968. www.meassociation.org.uk) for details and
tickets.

Pain project
The third project is one that we announced in July, having agreed to accept a donation of funds from the CFS Research Foundation funds
for research.
The Foundations Trustees have decided to close the charity following the sad death of its co-founder and Honorary Director, Anne
Faulkner, who was affected by M.E. since childhood. Founded in 1992 to fund biomedical research, the charity has awarded grants
totalling 2 million since its inception.
Action for M.E. will manage the funding (already secured and allocated by the CFS Research Foundation) for the neurophysiology of pain
in M.E./CFS study by contracted agreement with Queen Mary University, London.
Sonya Chowdhury, Chief Executive, Action for M.E., says, We are enormously honoured to be carrying on the work of the CFS Research
Foundation with this valuable study. I have met Anne Faulkners daughter Jane to express our thanks for her mothers invaluable
contribution to the field of M.E. research.
This 231,410, three-year study, which began in January, uses cutting-edge technology to investigate how the brains of people with
M.E./CFS experience pain and is being carried out by Prof Peter White and Dr Julius Bourke at Barts and the London Medical School and
the Imanova Centre for Imaging Sciences, Hammersmith Hospital, London.

Underlying abnormalities
The study seeks to discover the physiological and chemical abnormalities underlying pain in people with M.E.
A large majority of people with M.E. experience painful symptoms including muscle and joint pain, headaches, sore throat and lymph node

pain. Many endure chronic widespread pain which can become almost unbearable. An additional problem for these sufferers is that normal
pain killers do little to ease their pain.
Scientists and doctors know very little about why pain is such a problem but there is some evidence to suggest that the way the brain
handles pain signals in people with M.E. different from that in healthy people.
There are two potential reasons:

spinal sensitisation, in which non-painful sensations are felt as pain. This is because nerves that are not specialised in detecting pain
tell the spinal cord that what is being felt is hurting us (called allodynia), while mildly painful sensations are felt as unbearable because
the brains natural defences dont work properly.
central augmentation, in which the brains pain matrix becomes overly sensitive, reacting faster than normal to the possibility of pain
which it then interprets as being more painful and unpleasant.

Together these are referred to as central sensitisation. This condition is not specific to M.E. but the particular biological and biomedical
mechanisms which cause it in people with M.E. are unknown.
The research team will attack the problem on four fronts.
First, they will measure pain thresholds to a number of potentially painful stimuli (eg. pressure and heat) and assess whether there is
spinal cord sensitivity to pain (spinal sensitisation).
Second, they will use cutting edge functional magnetic resonance imaging (fMRI) to scan the brains of people with M.E., to examine the
pain matrix (pain pathways) and see how they differ from healthy controls.
Third, they will use two medications that block two of the brains pain chemical transmitters (dopamine and the opioids) in combination
with fMRI to see how they are involved in the pain pathways and the response to pain.
Fourth, the team will see whether the differences in pain levels, central sensitisation and activity of the pain matrix are related to
differences in a particular gene in people with M.E.
Sonya says, I am aware that some members of the patient community are likely to be critical of Action for M.E. for accepting the CFS
Research Foundations donation of funds in view of the research project it is currently funding.
All our research-funded work is subject to rigorous checks and this study is no exception. We expect that this research will lead to a
better understanding of how the brain is involved in pain symptoms in people with M.E., and thus provide a way forward to consider more
effective treatments.

Post-mortem tissue bank

An Action for M.E.-funded study to develop a protocol for establishing a post-mortem M.E. brain and tissue bank was published in June in
BMC Research Notes.
The research team, led by Dr Luis Nacul, London School of Hygiene & Tropical Medicine, says: We were able to establish the desirability
and feasibility of establishing a tissue bank for the study of M.E./CFS and to develop a protocol for its establishment. Our conclusions
were that this would best be met by situating the M.E./CFS tissue bank within an operational tissue bank, thus benefiting from existing
infrastructure and experience while optimising the use of resources.
In addition, the involvement of patients and their representatives and particularly charities working with people with ME/CFS would
provide the necessary framework to ensure that the research is truly participatory and ongoing recruitment is safeguarding the long term
sustainability of the bank.
Sonya Chowdhury, CEO, Action for M.E., says: We are delighted to have been able to fund this work. We know that post-mortem
investigations have been vital in helping scientists better understand other conditions, such as Parkinsons disease. This study shows that
the same could be done for M.E.
Discussions are continuing about how best to now take this forward, not least among the researchers who undertook this study. The
key will be securing funding. As soon as there are updates to report or we get involved in any related work, we will let our members and
supporters know.
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2014 Action for M.E.
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