The National ME/FM Action Network (Canada) spearheaded the drive for the development for expert consensus documents, which would include clinical definitions, diagnostic and treatment protocols, and a discussion of pertinent research for Fibromyalgia Syndrome (FMS) and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). As increasing numbers of FMS and ME/CFS patients asked about knowledgeable doctors, it quickly became clear that there was a need for more education about the illnesses among primary care practitioners. The Network sent out a questionnaire to doctors across Canada asking what items would be most helpful in assisting them with their FMS and ME/CFS patients. The physicians responded that clinical definitions, as well as diagnostic and treatment protocols, were most important.
The National ME/FM Action Network approached two clinicians knowledgeable and experienced in FMS and ME/CFS, Dr. Anil Jain of Ontario and Dr. Bruce Carruthers of British Columbia, who agreed to co-author draft documents. Lydia Neilson, President of the National ME/FM Action Network, met with the Honourable Alan Rock, then Minister of Health, to discuss the results of the doctors’ survey and the draft documents. The Honourable Alan Rock responded by stating the draft clinical definition was “a milestone in the fight against this complex and tragic condition”.
Health Canada set up an expert medical subcommittee, which established the “Terms of Reference” for the consensus panels. One of the stipulations was that at least one member of each panel must be nominated by each of the five stakeholder groups of government, universities, clinicians, industry, and advocacy. There were to be at least ten members on each panel, four of whom could come from outside of Canada. The members of the panels must be either practicing MDs actively treating and/or diagnosing FMS or ME/CFS, or MDs or Ph Ds involved in clinical research of the respective illness. The focus was to provide the practitioner with clinical definitions that addressed a broader spectrum of the pathogenesis of the illnesses, as well as provide diagnostic and treatment protocols. The panels would have autonomy over their consensus documents.
The thirteen-member expert consensus panel selected by Health Canada for FMS received a total of forty-six nominations. The eleven-member expert consensus panel for ME/CFS received a total of thirty-seven nominations. Each group received numerous nominations from each stakeholder group. The members of each consensus panel represented clinicians, university medical faculty, and researchers in their respective areas of FMS and ME/CFS. Collectively, each panel had diagnosed and/or treated more than twenty thousand[20,000] FMS or ME/CFS patients.
Health Canada planned for a Consensus Workshop to be held on March 30 to April 1, 2001. All members of each expert consensus panel were sent the draft documents, which went through three rounds of revision prior to the Consensus Workshops.
Crystaal (Biovail Pharmaceuticals) kindly agreed to fund the workshops without having any involvement with or influence over the Consensus Documents. They hired Science and Medicine Canada to organize and facilitate the workshops.
The documents received consensus, in principle, at the workshop with directive for various members to revise some sections. The documents were compiled by Consensus Coordinator and sent back to the panels. There was 100% consensus by the members of each of the consensus panel on their final document.
Bruce M. Carruthers, MD, CM, FRCP(C)
Lead author of the ME/CFS Consensus Document,
Co-Editor of the FMS Consensus Document
Anil Kumar Jain, B. Sc., MD
Co-Editor of the FMS Consensus Document
Marjorie I. van de Sande, B. Ed., Grad. Dip. Ed.
Consensus Coordinator
Director of Education, National ME/FM Action Network