THE HISTORY & ESTABLISHMENT
OF
THE CANADIAN ME/CFS & FMS DEFINITIONS
OCTOBER 1995
LABORATORY CENTRE FOR DISEASE CONTROL (LCDC) - CANADA
LCDC at that time was the contact for the National ME/FM Action Network. It was the government department who also was looking into ME/CFS and FMS. A research definition had been published in December 1994 by the U.S. Laboratory Centres for Disease Control, & Prevention (CDC) in Atlanta Georgia and our organization wanted the LCDC to help spread awareness in Canada of ME/CFS and FMS.
We had had numerous meetings with LCDC and on July 14th, 1995 we asked them what LCDC was planning to do now that the CDC had published the criteria for ME/CFS diagnosis. As no reply had been received by us, we followed up with another request and we received a couriered letter on October 19, 1995. In it Dr. J.Z. Losos, MD, DECH, FRCPC, FACPM, Director General of the LCDC stated he shared our concern about ME/CFS and FMS, he stated that the conditions were a “very complex and intriguing group of diseases……..there still remains many unresolved issues that need further research and elucidation.”
To this end, the Laboratory Centre for disease Control (LCDC) had held a workshop on ME/CFS in September of 1989, to explore the diagnosis of the illness, its proper case definition and promising areas for future research. The Proceedings were published in January 1991. Due to budgetary constraints LCDC advised that “……it is not in a position to conduct its own research on these diseases at this point. We will, however, continue to work with NHRDP [National Research & Development Program] and MRC [Medical Research Council] to facilitate research in this important area…..”
MARCH 1997
THE NEXT STEP - MEDICAL PROFESSIONALS’ PARTICIPATION
When the CDC established the 1994 ME/CFS criteria and the LCDC acknowledged and accepted this definition, the National ME/FM Action Network felt it was time to request the help of the medical professionals in our efforts to bring awareness to Canada and to establish a standard set of criteria for clinical diagnosis of ME/CFS and FMS. We therefore requested that doctors sign a form wherein they supported our stand that a standard clinical definition was needed in order to diagnose for ME/CFS and FMS. This was accomplished. Support organizations, members and the general public all joined in to circulate our request.
AUGUST 1997
LABORATORY CENTRE FOR DISEASE CONTROL- UPDATE
We had a meeting with an official of the LCDC on July 28th, 1997 for two hours. They were very impressed by the fact that we were able to get the assistance of the medical professionals to support us in our stand that a clinical definition was necessary.
SEPTEMBER 1997
MEDICAL PROFESSIONALS’ PARTICIPATION CONTINUES
As of September 30th, 1997 we had received 151 replies from doctors across Canada who were diagnosing and treating ME/CFS and FMS.. Of those 151 replies, only 4 stated that they could see new patients as the need for medical assistance spread.
As a result of the response of the medical professionals to its concern of a lack of a clinical definition, the LCDC agreed that a clinical definition was necessary.
DECEMBER 1998
MP SURVEYED DOCTORS ON THEIR KNOWLEDGE OF ME/CFS AND FMS
Ms Colleen Beaumier, MP of Brampton West-Mississauga due to contacts by her constituents, did a survey of General Practitioners’ in the Peel Region: The doctors responded as follows:
- 79% stated it was not a curable psychological illness;
- 50% stated that is was an organic illness while 38% said it was not and 6% were uncertain;
- 94% were familiar with the use of tender point identification as a method of diagnosing for Fibromyalgia;
- 73% stated that Fibromyalgia was best treated with antidepressants, 50% with aerobic exercise, 4% chiropractic, 21% massage, 6% with narcotics and painkilling drugs, 23% with physical therapy and 15% with psychiatry;
- 69% stated that Fibromyalgia causes sufficient disability to prevent people from regular/unadjusted work performance, 12% stated it did not and 6% were uncertain;
- 75% stated that their profession would benefit from a standardized criteria to diagnose FM.
JUNE 1999
THE FIRST DRAFTS OF THE DEFINITIONS
As a result of the National ME/FM Action Network’s investigation into what was required to help the ME/CFS and FMS communities, it recruited Drs. Bruce Carruthers of British Columbia. and Anil Jain of Ontario to initially draft the ME/CFS and FMS definitions. Their extensive experience with the ME/CFS and FMS communities were vital to the initial draft. Our Network’s Director of Education at that time was Marj van de Sande who coordinated the work of the doctors and worked diligently with them to compile the document into an 'easy to locate' format. They worked for approximately one year on this document and the 1999 draft was ready for a peer-review and input from an expert panel.
Dr. Bruce Carruthers Dr. Anil Jain
As a small token of appreciation of their work, the National ME/FM Action Network presented Dr. Anil Jain and Dr. Bruce Carruthers with an award for their dedication and total commitment of the drafting of the ME/CFS and FM clinical definitions. These awards were presented to them at the welcoming reception, which was held the day before the consensus meeting. In addition, the New Brunswick ME/CFS Association honoured these doctors by its National Award echoing the praise our Network bestowed on doctors. |
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ME/CFS & FM CLINICAL DEFINITIONS PRESENTED TO LCDC/MINISTER OF HEALTH
On July 21, 1999 the National ME/FM Action Network had a meeting with LCDC in Ottawa at which time we presented the draft definitions/protocols document to the Minister of Health's representatives. At this meeting, we were advised that there were no funds available for the peer-review as Health Canada had not allocated any funds for ME/CFS and FMS. This came as a shock to us. In the Honourable Allan Rock's May 31, 1999, letter to the National ME/FM Action Network he had stated, "The development of draft clinical definitions for ME/FM is a milestone in the fight against this complex and tragic condition."
OCTOBER 1999
MEETING WITH DIRECTOR GENERAL OF LCDC
On Wednesday, January 5, 2000 the National ME/FM Action Network had a meeting with the Director General of the LCDC, who was representing the Minister of Health On the agenda for this meeting was a discussion for funding for a peer-review of the ME/CFS and FMS clinical definitions and treatment protocols and funding for the dissemination of the information to the Canadian doctors.
We again stressed that the clinical definitions were necessary as there was no standardized protocols followed across Canada. The 1994 ME/CFS definition established by the U.S. Centers for Disease Control & Prevent is a research definition not a clinical one and doctors needed one for diagnosis and treatment.
DECEMBER 1999 – MARCH 2000
NATIONAL ME/FM ACTION NETWORK CONTINUES PRESSURE ON GOVERNMENT
We continued our pressure and contact with the LCDC and Health Canada and started to increase our communication with the various organizations and support groups who were aware of experienced doctors and researchers. By that time, we had slowly developed a communication network with them so that we would be aware of progress that was being made elsewhere.
APRIL 2000 – OCTOBER 2000
NEGATIVE DEVELOPMENTS
In an effort to indicate to the then Minister of Health, the Honourable Allan Rock, the importance of having the definitions peer-reviewed by experienced ME/CFS and FMS professionals, we sent a letter to everyone we knew in Canada who were members or had been in contact with us and asked them to sign a letter supporting the Network’s position.
We presented the results to Health Canada who then stated they would hold a Symposium on ME/CFS, FMS and environmental illness. They had set up a Planning Committee to coordinate it. However, on November 28th, 2000 the Planning Committee made the decision to cancel the Symposium based on a number of considerations, including lack of secured funding.
The National ME/FM Action Network has always preferred that a Symposium be held after the ME/FM Clinical Definitions and Treatment Protocols were peer reviewed and published but when Health Canada invited us to participate in the planning of a Symposium, we took the opportunity to do so. Our main goal was always the peer review of the clinical definitions.
NATIONAL ME/FM ACTION TAKES ACTION
JANUARY 2001
It had been two years since the clinical definitions had been drafted and after the latest setback, we decided to take a different approach. Over the years we had compiled a roster of doctors and researchers in the field of ME/CFS and FMS and started compiling a roster in anticipation of establishing a panel of experts for consideration and discussion with Health Canada. A decision was reached as follows:
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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, advocacy and industry.
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A wide range of expertise was represented on the panels including rheumatologists, specialists in internal medicine and infectious disease, a neurosurgeon/ neuroresearcher, a hematologist, etc. There were treating clinicians, teaching university professors and researchers including world-renowned researcher, Dr. Kenny De Meirleir of Belgium who had approximately 300 scientific publications. His research on the dysfunction of the RNase L antiviral defense pathway was anticipated to result in a clinical marker for ME/CFS.
PEER REVIEW PANEL ESTABLISHED & DATE SET
FIBROMYALGIA EXPERT CONSENSUS PANEL: Dr. Steven Barron; Dr. Bruce Carruthers; Dr. Stu Donaldson; Dr. James Dunne; Dr. Emerson Gingrich; Dr. Dan Heffez, USA; Dr. Anil Jain; Dr. Frances Leung; Dr. Daniel Malone, USA; Dr. Thomas Romano, USA; Dr. Jon Russell, USA; Dr. David Saul; Dr. Donald Seibel.
MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME EXPERT CONSENSUS PANEL: Dr. Allison Bested; Dr. Bruce Carruthers; Dr. Kenny De Meirleir, Belgium; Dr. Pierre Flor-Henry; Dr. Anil Jain; Dr. Pradip Joshi; Dr. Nancy Klimas, USA; Dr. Martin Lerner, USA; Dr. James Mc Sherry; Dr. Dan Peterson, USA; Dr. Peter Powles; Dr. Jeff Sherkey.
The eleven physicians, who made up the ME/CFS Expert Consensus Panel, have between them diagnosed and/or treated more than 20,000 ME/CFS patients.
After consultations with the Panel, a date was set for the peer review and was scheduled for March 30th to April 1st, 2001 in Toronto, Ontario.
We were able to secure funding for this conference through a chance luncheon meeting by Lydia Neilson with a representative of Crystaal Corporation of Mississauga. The representative asked how they could help us and they were advised that we were attempting to secure funding to bring the peer review panels together for a consensus for the definitions.
Crystaal Corporation of Mississauga became the sponsor of this historical event and they hired Science & Medicine Canada Inc., a management company, to help the National ME/FM Action Network run this event.
The panels, in the meantime, had been reviewing the documents since December 2000 in anticipation of the peer review.
CONSENSUS MEETING A UNANIMOUS SUCCESS
APRIL 2001
Canada made history in ME/CFS and FM as both expert panels came to a UNANIMOUS consensus on their clinical definition /protocols document.
The Honourable Allan Rock, who was unable to attend the consensus meeting, sent a written congratulatory message that was read at the meeting. The atmosphere of the welcome reception had an aura of excitement and the positive energy was absolutely electrical. Crystaal Corporation, which sponsored the consensus meeting, was awed at the enthusiasm of the doctors. They said that in all their years of working with the medical community they had never experienced such positive, productive and professional panels!
As a result of the consensus meeting, the data gathered needed to now be coordinated properly and then reviewed by the doctors to ensure all information was accurate as the definitions are backed up in the documents by research findings.
The focus of the clinical definitions is to have the physician look at the whole spectrum of pathologies of these illnesses. There are sections on diagnostic and treatment protocols so that the family physician will have a "manual" that explains how to diagnose and treat patients. Having the documents reviewed and endorsed by panels of experts gives them credibility and will empower the doctors treating these illnesses. For the patient, it means earlier diagnosis and appropriate treatment which is essential in order to lessen the impact of these illnesses.
CLINICAL DEFINITIONS PUBLISHED
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols – A Consensus Document was published in Volume 11, Number 1, 2003 in the *Journal of Chronic Fatigue Syndrome and Published by The Haworth Medical Press © ISSN: 1057-3321
Fibromyalgia Syndrome: Canadian Clinical Working Case Definition, Diagnostic and Treatment Protocols – A Consensus Document was published in Journal of Musculoskeletal Pain (11(4):3-107, 2003. Co-Published simultaneously in The Fibromyalgia Syndrome: A Clinical Case Definition for Practitioners, pp. 3-108 ISBN: 0-7890-2574, Published by © Haworth Press Inc.
*About the Journal of Chronic Fatigue Syndrome
The Journal of Chronic Fatigue Syndrome presents original research, practical clinical management, case reports, and literature reviews that provide a comprehensive understanding of CFS.
ACCOLADES
DECEMBER 2003
THE GUIDELINES ADVISORY COMMITTEE OF THE ONTARIO MEDICAL ASSOCIATION AND THE ONTARIO MINISTRY OF HEALTH AND LONG TERM CARE REVIEWS THE ME/CFS CONSENSUS DOCUMENT
Alison Bested, MD, FRCP(C), who was a member of the Expert Consensus Panel for the ME/CFS Consensus Document; and a representative of The Myalgic Encephalomyelitis Association of Ontario (MEAO), met with Dr. David McCutcheon, Assistant Deputy Minister, Health Services Division, Ministry of Health and Long-Term Care for Ontario to discuss whether the Ontario Medical Association and the Ontario Ministry of Health and Long Term Care would review the ME/CFS Consensus Document. Dr. McCutcheon agreed to have the Guidelines Advisory Committee of the Ontario Medical Association and Ontario Ministry of Health and Long Term Care evaluate the ME/CFS Consensus Document.
Alison Bested, MD, FRCP(C)
The Guidelines Advisory Committee of the Ontario Medical Association and the Ontario Ministry of Health and Long Term Care gave “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols”, Journal of Chronic Fatigue Syndrome 11(1):7-116, 2003 a three out of four-apple rating. In a letter from the Guidelines Advisory Committee, the chairman reported, “Three apples denote a very good guideline”. Dr. Davis continued, “three-apple guidelines are well produced and useful for practicing clinicians". The chairman added, "We hope that this information proves useful as you deliberate on how to ensure the early diagnosis and medical care of patients with chronic fatigue syndrome."
2005
FOLLOW-UP - THE NECESSITY OF ME/CFS AND FMS OVERVIEWS
The College of Family Physicians (Canada) suggested that short overviews of the ME/CFS and FMS Consensus Documents could be of further assistance to busy medical professionals.
Therefore, Dr. Carruthers, Co-Author of the ME/CFS Consensus Document and Co-Editor of the FMS Consensus Document and Ms Marjorie van de Sande wrote Overviews of those documents.
The National ME/FM Action Network has sent Overviews to the heads of relevant departments in medical schools, university medical libraries, colleges of physicians and surgeons, rheumatologists for FMS throughout Canada. Overviews were also sent to physicians of family medicine in the Maritime provinces, territories and Saskatchewan .
The Public Health Agency of Canada now has both ME/CFS and FMS Overviews on its website and have translated the FMS document into French which is now back in our possession and in the final stages of formatting. Once printed, it will be available as is the ME/CFS English version.
The following countries have gotten printing and translation rights for the Overviews:
AQEM, A Quebec ME Association;
East Anglia ME Patient Partnership of the UK who have sent them throughout the UK, Sweden, Norway and the Irish ME Support Group;
Dr. Mitchel of the UK who ordered 4000 copies;
Invest ME now has the rights from East Anglia ME;
The Alison Hunter Memorial Foundation in Australia;
New Zealand and Denmark has been given permission to reprint;
CFS Italia;
MEtrans Netherlands;
Fatigatio, Germany;
MEtrans, Steungroep ME en Arbeidsongeschiktheid, and
ME/CFS Stichting Netherlands; and
Cathy van Riel translated both the ME/CFS and FMS Overviews into Spanish and reviewed by doctors and gave the finished translation to Spanish organizations and made them accessible online.
On May 30, 2005, Lydia Neilson was awarded the Meritorious Service Medal by the then Governor General and Commander-in-Chief of Canada, Her Excellency the Right Honourable Adrienne Clarkson. This medical was created in 1991 by Her Royal Majesty Queen Elizabeth II and recognizes the performance of a deed or activity performed in a highly professional manner or of a very high standard that brings benefit or honour to Canada.
Lydia E. Neilson, M.S.M. Founder
Chief Executive Officer
National ME/FM Action Network
INTRODUCTION – WHO IS THE NATIONAL ME/FM ACTION NETWORK
The National ME/FM Action Network is a Canadian registered charitable organization of volunteers reaching out internationally and dedicated to helping the medical, legal and general public in spreading awareness for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FMS) through support, advocacy, education and research. It depends on charitable donations and annual memberships which are open to everyone.
In addition, it publishes a quarterly newsletter ‘QUEST’ quarterly which is included free of charge to those who become members. On our website www.mefmaction.net a library contains past newsletters dating back to its founding in June 1993 which can be viewed there but stop short one year prior to the present date. The latest issues are sent either electronically or through the mail system to those who are members.
The National ME/FM Action Network, through its newsletter and website, reports on what the Network’s projects keeps everyone abreast of developments in the ME/CFS and FMS world.