Original contribution to this discussion:
For people on PR who are not aware of some (but not all) of the reasons why the MEA has decided it is far better to remain on the Board of the CMRC than to leave and cut the charity representation right down to one (i.e. AfME), this is my most recent summary:
1 The CMRC has no staff of funding. It does not therefore fund any research and will not be funding research.
2 Members of the Board of the CMRC obviously have a very full diary of work and other voluntary commitments - so there are limits to what the CMRC can do or achieve.
3 The MEA receives no government funding. The work we do in relation to information, support, campaigning and research is carried out by a small number of staff, trustees and volunteers. We rely on donations and membership fees.
4 CMRC work forms only a very small part of MEA research activity - the vast majority of my research time is spent dealing with our currently funded research studies (ie metabolomic and muscle/mitochondrial research, post mortem tissue research, severe ME/CFS) and developing UK research infrastructure (eg the ME Biobank at UCL/Royal Free Hospital) that we fund.
ME Biobank:
http://cureme.lshtm.ac.uk
Link to all the current research being funded by the MEA Ramsay Research Fund:
http://www.meassociation.org.uk/research2015/
5 In relation to what the CMRC has achieved:
The CMRC has set up an annual two day research conference where the content is almost entirely biomedical research. These conferences are open to any researcher who wants to attend.
They have succeeded in bringing in a considerable number of researchers from a variety of biomedical -ologies who are new to the subject of ME/CFS research. My report on the CMRC conference in Newcastle will confirm that the content of the CMRC conference is biomedical research and not psychological research.
The public can attend the first day of these conferences for a very small fee.
Newcastle conference report link:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/
6 In addition to the annual two day annual research conferences, the CMRC has, or is, involved with a number of other research initiatives. These include:
- the recent report on research funding for ME/CFS:
http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf
- the recent meeting that brought together all the main government funders of ME/CFS research - MRC, NIHR, NIH from America etc - as well as charities and representatives from the pharmaceutical industry
- meeting with representatives from various pharmaceutical companies to get them interested in ME/CFS research
- setting up a scheme to help young researchers prepare research grant applications
7 The Board of the CMRC covers a wide spectum of views relating to both cause and management of ME/CFS.
Members of the Board of the CMRC cover a wide range of disciplines - autonomic nervous system dysfunction, general medicine, genetics, infectious diseases, immunopharmacology, neuropathology, paediatrics, sleep. We have one doctor on the CMRC Board who is a psychiatrist.
Whilst some members take what is often referred to as a biopsychosocial view of causation, there are others who do not.
The CMRC has made it clear that:
One of the main challenges that continues to be addressed is that this illness, or cluster of illnesses, is a psychiatric illness, which it is not (reference: Minutes for CMRC Board meeting held on 21st March 2017).
8 Where the MEA disagrees with another member (or members) of the Board of the CMRC we make our views known - as we did in relation to the response regarding the presentation slides that were used at the British Renal conference for example.
We have also made our very critical views on the NICE guideline, PACE trial, Science Media Centre etc all very clear on numerous occasions.
This does inevitably create difficulties and tensions with some members of the Board. Our disagreements and public statements regarding the PACE trial (and other issues) did, in fact, form part of the reason for one member of the CMRC Board tendering his resignation.
Pace trial:
http://journals.sagepub.com/doi/full/10.1177/1359105317703786
SMC:
http://www.meassociation.org.uk/201...sociation-writes-to-the-science-media-centre/
I do not sit quietly by when the MEA disagrees with something at the CMRC.
But we do not walk out when the majority of the Board take a different view.
9 We have already made it clear why we feel it is more important to remain as a member of the Board of the CMRC - even though we do not agree with some of the decisions that are being made. So I will not go over this ground yet again.
10 If the MEA left the Board of the CMRC it would still carry on with all the work it is doing, including involvement with the MEGA research study. All that would happen is that our position as a charity representative would be left vacant or be filled by another ME/CFS charity.
11 We will continue to review our position on the Board of the CMRC - and this will include taking careful note of what MEA members are saying about our involvement with the CMRC.
Finally, on a personal note, I have had this wretched disease for over 30 years - which followed an epside of chicken pox encephalitis that I caught from one of my patients.
I want to find the cause and an effective form of treatment.
And this is why I want to take a constructive and (where necessary) critical part in any research initiatiivee that is involved in either causation or treatment of ME/CFS.
Dr Charles Shepherd
Hon Medical Adviser, MEA
(June 19 2017)