RiME/MRC Meeting - 2 September 2002 Summary of main questions & points covered.

Representing the MRC were: Elizabeth Mitchell (External Communications Manager), Jane Lee (Director of Corporate Affairs), Dr Chris Watkins (CFS/ME Programme Manager) and Jacqueline Apperly (Consumer Liaison Group). Representing RiME: Paul Davis and Margaret Kearsey-Lawson.

Mrs Lee accepted the 16,002-signature petition in the absence of Professor Radda. Mrs Mitchell acknowledged receipt of the following materials: copies of Dr A.M. Ramsay's book ME and Post Viral Fatigue States, a critique of the Oxford Criteria, Dr Dowsetts critique of the Linbury Trust Booklet (1998), MERGE's Unhelpful Counsel and a collation of 24 letters which had been sent to RiME. She said these would be given to the members of the CFS/ME Research Advisory Group.

P.D. Why is the MRC using the term CFS/ME?

C.W. The MRC has been asked by the Health Department to take up the research recommendations of the CMO's Report: to look at research into "CFS/ME". It is not sticking to labels but looking broadly at the issue.

P.D. I will return to the CMO's Report in a minute. What does the / mean? C.W. Difficult. Using terminology, the CMO's Group couldn't determine a specific difference.

P D. RiME deems "CFS/ME" an artificial construct with no diagnostic or research criteria and no scientific precision. ME, by contrast, is a clearly defined, clinically identifiable disease,

J.L. Questions of terminology are being looked at, currently, especially in the light of the questionnaire. We cannot prejudge it.

E.M. The Group has been set up and psychiatrists arc involved.

P.D. PWME would like to see the MRC taking its remit from clinicians who have had long-term experience with ME patients e.g. Ramsay, Dowsett...

C.W. The distinctions between Ramsay and Oxford/CDC criteria are important in terms of understanding patient populations and, hence, research. The general relevance of studies is unclear because of the different criteria used.

P.D. Isn't there a need for two panels: One for ME, one for CFS?

EM/JL We couldn't prejudge or discuss at this stage.

P D. You're aware that World Health Organisation lists Myalgic Encephalomyelitis as a disease of the nervous system?

C W Yes.

P.D. CMO's Report: If the MRC is serious about taking a fresh look, should it be unduly influenced by one report?

C.W. The MRC would look at research into all areas.

P D. The Report was financed by the Linbury Trust, a private organisation, which has spent millions on research into "Chronic Fatigue", a condition where fatigue is the main symptom.

[The MRC Representatives did not seem aware of this]

P.D. The Report is based, largely, on speculation and hypothesis not rigorous scientific research. In particular, epidemiology: neither the CMC's Report nor the accompanying York Review include studies on ME persons who are bed or-wheelchair-bound.

J.A. The MRC was aware of some dissatisfaction with the Report.

P.D. PWME were never properly consulted. Margaret ...

M K. I was a member of the Reference Group and went to the Sounding Board Events. The agenda of both meetings was prescribed: PWME were gagged and not allowed to talk about the difference between ME and CFS or other relevant issues. Dissension was never recorded. Vital information submitted by 25% Group and ForT was disregarded.

P.D. You're aware that a number of parties e.g. 25% Group wouldn't sign? C.W. Yes.

P.D. You received .copies of MERGE's Unhelpful Councel? [MRC Representatives nodded]

P.D. Our letters show how ill severely affected PWME are. Many cannot attend to basic needs and have to be nursed 24/7. There are approximately 50,000 severely affected PWME in Britain.

J.A. Where do you get the figure from?

P.D. From ME patient organisations. Until the epidemiology is done. one will not know with any degree of accuracy. Data has, unforgivably, never been collated or processed. Recent studies or reports cannot be accurate.

RiME requests the MRC begins here re. epidemiology and physical tests. This would involve getting to these people's homes and listening to them and/or their carers.

J.A. How would one access these people?

P.D. You could ask the 25% Group and/or RiME for help. Severely affected PWME have specifically requested that the MEA and AfME are not involved in this process. They believe their membership lists are not representative of PWME, especially the severely affected.

J.A. The process would be inclusive and involve other patient groups.

P.D. The aims of RiME are different to the MEA and AfME. Whereas the latter are perceived as representing PWME and CFS, RiME is about strictly defined ME.

E.M. Thank you for clarifying that point.

P.D. Would the MRC set up a register of severely affected PWME?

C.W. I'm not sure how it would be set up. The MRC's service registers fulfil different roles from research registers.

E.M. You are not a lone voice. Many questionnaires were filled in by the severely affected or their carers.

C.W. How many people with CFS are severely affected?

P.D, I've no idea. I'm not here to represent people with CFS and am not sure what it is. Today, there is a move to lump CFS and other conditions under an even larger umbrella term, "functional somatic syndromes". PWME want definitions narrowed not widened.

P.D. The importance of names and definitions: Psychiatric models of treatment, i.e. GE/CBT, which might help people with CFS do not help the vast majority with ME and often cause harm.

What little money (public and private) has been put into "CFS/ME" tends to be centred on psychiatric models of treatment i.e. GE/CBT e.g. the Linbury Trust. 16,000 people are saying to the MRC: "No more interference from psychiatrists". The interference of one particular school of social psychiatry has caused inestimable damage to PWME and delayed/is delaying research into other legitimate areas. More and more PWME are considering legal action against individual doctors who prescribe GE/CBT for PWME.

PWME want to see money put into: Epidemiology (a publicly funded study based on a strictly defined criteria and involving severely affected); investigation of underlying physical causes. The latter may lead to an accurate diagnostic test and indicate subgroups within ME.

J.A. The CFS/ME Research Advisory Group would be made aware of the points RiME has made.

The meeting commenced at 11.30am and ended at 12.45pm.

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