Canada leads the world with a clinical definition for ME/CFS

http://www.cfsresearch.org/cfs/research/general/15nf.htm

Date: December 2002
NATIONAL ME/FM ACTION NETWORK
3836 Carling Avenue
Nepean, ON K2K 2Y6 Canada
Tel/Fax: (613) 829-6667
E-mail: ag922@ncf.ca
Web: http://www.mefmaction.net

A Clinical Definition (clinical diagnostic criteria) for ME/CFS has been developed by an Expert Consensus Panel. Although created to standardize research, the American Centers of Disease Control (CDC) Definition is being used in Canada and most other countries to diagnose ME/CFS. There has been a growing demand for diagnostic criteria designed for a clinical setting. In response to a survey by the National ME/FM Action Network, doctors across Canada overwhelming concurred that a clinical definition, along with diagnostic and treatment guidelines, would be the most helpful items in diagnosing and treating ME/CFS patients. In addition to the clinical definition, the consensus document includes a discussion of the prominent symptoms, clinical practice, diagnostic and treatment guidelines based on the best available research evidence, and an overview of research on ME/CFS. Dr. Bruce M. Carruthers of B. C., lead author, stated that "The Clinical Definition will enable clinicians to make an early diagnosis which may assist in lessening the impact of ME/CFS in some patients. It wil reduce the expensive problem of patients being sent to many specialists before being diagnosed, and will allow patients to receive appropriate treatments in a timely fashion,"
A definition was developed and published in 1988 and later revised in 1994 under the aegis of the CDC. These definitions along with the Australian and Oxford, U.K definitions were developed to standardize research and not designed to be used for clinical settings.The CDC definition requires that the patient must have persistent or relapsing fatigue that lasts more than six months and four of eight other criteria. One problem with this definition is that fatigue is a symptom of many diseases. By making other cardinal symptoms optional, it increases the diagnostic difficulty of distinguishing the pathological fatigue of ME/CFS from other fatiguing illnesses with overlapping symptoms.
The Expert Consensus Panel developed a clinical case definition that provides a flexible, comprehensive framework. More of the prominent symptoms are compulsory and symptoms that share a common region of pathogenesis are grouped together to give clarity and completeness. In addition to severe prolonged fatigue, the definition includes the hallmark symptoms of post-exertional malaise and/or fatigue sleep dysfunction, pain, two or more of the given neurological/cognitive manifestations, and at least one of the given symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations. The illness must persist for at least six months. Diagnostic exclusions and common co-morbid entities are also mentioned.
The Expert Consensus Panel felt that the Clinical Case Definition more adequately expresses the complexity of symptoms in a given patient's pathogenesis. It should reflect ME/CFS as a distinct medical entity and help distinguish it from other overlapping medical conditions in the absence of a definitive laboratory test. The eleven physicians, who made up the Expert Consensus Panel, have between them diagnosed and/or treated more than 20,000 ME/CFS patients. All authors approved the Consensus Document
According to a large American study by Dr. Leonard Jason, approximately 422 per 100,000 people (approximately 150,000 Canadians) suffer from ME/CFS compared to 26 per 100,000 women who have breast cancer.
ME/CFS is a severe illness that can be debilitating. There is no known cure. It often begins with a viral type infection such as an acute respiratory or flu-like illness. But instead of recovering, the person's health deteriorates and many other symptoms appear. A number of viruses have been studied but so far there is no conclusive support for any one pathogen causing the illness. Numerous studies have confirmed that there is a biochemical breakdown of one of the body's defense pathways used to fight viruses, which supports the theory that ME/CFS is triggered by an infection. Other triggers an mechanisms are also being investigated. The development of a clinical definition, and clinical diagnostic and treatment guidelines is a milestone in the fight against this complex and often debilitating illness!
Many credits must be given:
•   The National ME/FM Action Network for spearheading the drive for the development of a clinical definition, diagnostic and treatment protocols. Lydia Neilson, President, has lobbied Health Canada for years to make this a reality.
•    Dr. Bruce Caimthers and Dr. Anil Jain: who kindly donated their time and expertise to write the draft document. Dr. Carruthers also spent countless hours on the revisions and editing.
•   The Expert Consensus Panel (Dr. Carruthers, Dr, Jain, Dr, Kenny De Meirleir [Belgium], Dr. Daniel Peterson [USA], Dr. Nanc; Mimas [USA], Dr. Martin Lerner [USA], Dr. Alison Bested, Dr. Pierre Flor-Henry, Dr. Pradip Joshi, Dr. Peter Powles, and Dr Jeffrey Sherkey): for their genuine concern for the ME/CFS patient, for donating their time and expertise to the development of the Clinical Definition and Clinical Protocols, and their determination to make the Consensus Document a reality.
•   Marjorie van de Sande, Consensus Coordinator, (and Director of Education for the National ME/FM Action Network): for the countless hours she spent working with Dr. Camithers and the other members of the Expert Consensus Panel, for compiling the consensus document, and getting information back and forth between the panel members.
•   Health Canada: for the selection of the Expert Consensus Panel, and establishing the Terms of Reference for the panel.
•   Crystaal: for sponsoring the Expert Consensus Panel Workshop.
•   James McSherry: MB, ChB, CCFP, FCFP, FABMP, FAAFP, who was a member of the Expert Consensus Panel and participated in the review process, but was unable to attend the consensus meeting. We regret that Dr. McSherry has since passed away.
•   Kirn Jones: RNC, PhD, FNP, exercise physiologist, for her input in the exercise/treatment section.
•   Kerry Ellison: OT (non-practicing), for her input in the patient management/ treatment and assessing disability sections.
•   Hugh Scher LLP, for his input in the assessing disability section.
•    All the members of the National ME/FM Action Network: for their continuing encouragement and support
The Haworth Press Inc. For bringing the publication of the ME/CFS Consensus Document to fruition.