Where to now?

In the early years of ME/CFS societies in Australia our motto seems to have been, "We don’t know where we’re going, but we are on our way".

After the Adelaide Forum, for the first time I believe, we are able to say, "Don’t give up now, big advances coming, finally!"

Various attempts to define Chronic Fatigue Syndrome have floundered on the vagueness of the word "fatigue". Everybody gets fatigue, physically and mentally, from time to time. It is found as well in "serious illnesses", including heart disease and major depression. Rather than making "fatigue" the main compulsory symptom, in a new attempt at a "case definition" of ME/CFS, the Canadian Clinical Case definition, 2003 has brilliantly rewritten the guidelines to capture, at last, what ME/CFS is really all about. It is not that patients are fatigued. Healthy people get fatigued. Rather the definition specifically selects patients who worsen with exercise. This takes the emphasis away from the subjective sensation of "fatigue" and forces one to clearly describe the connection between fatigue and activity. This also embraces mental fatigue (loss of cognitive function and alertness) as well as physical fatigue (lack of energy and strength, often felt in the muscles). The patient must become symptomatically ill after exercise and must also have evidence of neurocognitive, neuroendocrine, dysautonomic (e.g. orthostatic intolerance) and immune malfunction.

The Adelaide Forum agreed to unanimously embrace the Canadian case definition with a strong recommendation that it also be taken up by ME/CFS societies.

The obfuscation, deliberate I believe, of the previous case definitions resulted in the lumping together of numerous diseases that have little or nothing to do with each, apart from exhibiting "fatigue" to some degree. This has been corrected. The Canadian definition states that "patients become worse after exercise rather than better". There are pathologically slow recovery periods – usually 24 hours or longer.

Professor Kenny De Meirleir, who incidentally helped to frame the Canadian definition, gave a wonderful exposition summarizing the research enshrined in over 5000 scientific papers. His own immense contribution and modesty were inspirational. Briefly, he and others have elucidated a whole battery of biochemical tests that reflect the great complexity of CFS. Settling for the moment on a panel of five or six basic tests, mostly unavailable in Australia for the moment, he is able to separate ME/CFS patients into three separate groups, each with different causes, therapies and (sometimes) outcomes. His clinic in Brussels sees 800 CFS patients every three months.

Interestingly, given the biochemical results of these tests, without seeing the patient he is now able to predict into which group the patient falls, correctly in 95% of cases. This would be impossible if ME/CFS is a psychiatric illness. It is also highly significant that these tests can discriminate between ME/CFS and normal or non-CFS patients.

He told us of an encouraging story of a girl who was bed-bound from the age of 12 to 19 with ME/CFS. She is now running European marathons.

The take home message of the forum is, "do not give up, and hang on. The greyness is not that of evening before the dark night, it is the greyness of the dawn before a bright new day of hope for the sufferers of this hideous disease".

There was also discussion about encouraging laboratories of excellence to make readily available some or all of these tests so that the exciting work done in Belgium, Spain, Japan, Canada and the USA will soon be available in Australia.

To all those who supported the forum financially—thank you.

The Forum was convened by the Alison Hunter Memorial Foundation, with the financial assistance of:

• ME/Chronic Fatigue Syndrome Society of South Australia
• ME/Chronic Fatigue Syndrome Society of Victoria
• CFS/ME Special Fundraising Committee Victoria
• ME/CFS Support Group Western Australia
• ME/Chronic Fatigue Syndrome Society of New South Wales

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