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Canada Leads the World! - this is the proud boast of the National ME/FM Action Network - a Canadian consumer organisation based in Ottawa, which has been doing important work coordinating the development of clinical definitions and diagnostic and treatment protocols for CFS/ME and Fibromyalgia. They are called "consensus documents" because each was developed by a panel of international experts with real experience of treating and researching the illnesses. They were developed under the auspices of Health Canada, and the project was driven and guided by the National ME/FM Action Network in Canada.
Information about both documents is here on their website. For a short introduction to each, and a comparison of the ME/CFS document with the Australian CFS guidelines, see below.
FMS consensus document (2004)
ME/CFS consensus document (2003)
Why the Canadian ME/CFS Guidelines are better than the Australian
ones
The new Fibromyalgia Guidelines were published as: "Fibromyalgia Syndrome: Canadian Clinical Working Case Definition, Diagnostic and Treatment Protocols. A Consensus Document" in the Journal of Musculoskeletal Pain 11(4), 2004.
Authors include well-known FM practitioners such as Dr Jon Russell , Dr Thomas Romano and Dr Daniel Malone. Lydia Neilson, President of the National ME/FM Action Network in Canada, says:
"This comprehensive document provides the family physician a practical tool for diagnosing and treating patients with FMS. There are also a number of helpful suggestions for patients."
The article will also be published in a book, The Fibromyalgia Syndrome: A Clinical Definition for Practitioners by the The Haworth Press. You can get a 40% discount until December 1, 2004. (The promotional cost is US$14.97 which is around $21 + Australian.) Order the book online at http://www.haworthpress.com/store/product.asp?sku=5342 and use the promotional discount code FMS40 in the shopping cart to receive the discount.
The new Fibromyalgia Guidelines are also available online here [PDF].
NOTE: At the time of writing (10 May 2004) I haven't read the FMS "guidelines", but if they're as good as the ME/CFS ones they will be useful indeed. - Moira
The "Canadian guidelines" for ME/CFS were published in a special issue of the Journal of Chronic Fatigue Syndrome ( Vol. 11, No. 1, 2003 ). They were developed under the auspices of Health Canada, who convened an expert panel of internationally known doctors and researchers including such famous names as Dr. Daniel L. Peterson, Dr Nancy Klimas, and Dr Kenny de Meirleir.
To order the issue of the Journal of Chronic Fatigue Syndrome that contains both the guidelines and other relevant articles, go here to the Haworth Press website. Or go here to read it in PDF format on the National ME/FM Action Network's website.
Why the Canadian ME/CFS Guidelines are better than the Australian RACP Guidelines1. The Australian Guidelines over-emphasise fatigue and do not give a complete or accurate picture of the illness. They specifically exclude overlapping syndromes such as fibromyalgia or irritable bowel syndrome, which for many sufferers are an integral part of their illness. The Canadian Guidelines, in contrast, recognise that ME/CFS is far more than "just tiredness" and take account of the full range of symptoms including neurological, autonomic, neuroendocrine, and immune dysfunction. They also discuss fibromyalgia as part of the overall picture for many patients.
2. The Australian Guidelines portray CFS as a neuropsychiatric disorder linked to depression. The RACP working group, unlike the Canadian expert panel, was dominated by researchers who favor this point of view, and the research they used as evidence research was selected and interpreted to support it. There was a bias towards studies that purport to show the effectiveness of cognitive behavioural therapy and graduated exercise. Inconsistencies and methodological problems (such as, whether the subjects really met the criteria for CFS) were overlooked. On the other hand, many studies showing organic, physical abnormalities were judged not good enough to include as evidence. As a result, the work of some well-known and respected researchers was ignored.*
3. The Australian Guidelines followed a process for developing clinical practice guidelines laid down by the National Health and Medical Research Council. These require that research studies are assigned "quality of evidence ratings" from I to IV. Actual recommendations may only be based on Level I and Level II evidence, ie replicated results from controlled trials. "Consensus opinions of respected authorities, based on clinical experience and/or descriptive reports" are only assigned Level IV - the very lowest level of evidence that may be considered at all reliable - and the clinical experience of an experienced physician does not count at all. Why doesn't this approach work? Because there simply hasn't been enough good research on many aspects of the illness. Much of what we know or believe about the cause and treatment of ME/CFS/FM is the result of pioneering work by practicing doctors who have not been able to devote time and resources to lengthy large-scale research projects. The authors of the Canadian Guidelines (like the authors of the British CMO's report) have recognised this, and they also take patient reports and doctors' clinical experience into account.
4. The Australian Guidelines are based on the Fukuda criteria, which were designed not for diagnostic purposes but to select subjects for research. The Canadian expert panel first developed their own clinical case definition which is a great step forward in its own right.
* For more information about the development of the Australian Guidelines, see The CFS Guidelines story.
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last revised 16 May 2004