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In 2002 Paul Davis of RiME achieved a meeting with the Medical Research Council.
http://web.onetel.net.uk/~kickback/rime mrc meeting.htm
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 ........... '
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 .......... '
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