ME/CFS RESEARCH FORUM REPORT
Adelaide Research Network 3-4 June 2005
University of Adelaide, Adelaide Australia
Convenor: Alison Hunter Memorial Foundation
Supported by ME/CFS Society of SA, ME/CFS Society of Victoria, ME/CFS Society of NSW, ME/CFS Support Group (WA)
Forum Chair: Professor Kenny De Meirleir,
Professor of Physiology and Medicine
Free University of Brussels Belgium
REPORT OF ME/CFS FORUM
- To examine the strength of the biological evidence
- To develop consensus for ME/CFS research criteria
- To initiate protocols for post-mortem examination
- To initiate the establishment of a tissue/brain bank
The Adelaide ME/CFS Forum was an informal meeting of researchers and clinicians invited to present their work and to reach consensus on the issues around clinical diagnostic and research criteria for ME/CFS. When tight subject cohorts are identified, then ME/CFS research outcomes will more reliably progress medical knowledge to assist those who suffer with ME/CFS.
US Centers for Disease Control CDC research finds:
- CFS patients are more sick and have far greater consequent disability than patients with chronic obstructive lung disease, cardiac disease, osteoarthritis, and depression;
- $9.1 billion earnings are lost annually in the US due to disability caused by CFS;
- Fewer than 16% of sufferers in the general population are diagnosed and treated for CFS;
- The strongest predictor of the development of post infectious (chronic) fatigue syndrome is the severity of the acute illness at onset. Psychological factors play no role in the development of CFS following infection.
(CDC presentation American Association for Chronic Fatigue Syndrome AACFS Conference October 2004)
ME/CFS has been formally classified by the World Health Organisation WHO as a neurological disorder in the International Classification of Diseases ICD since 1969 (ICD10, G.93.33).
ME/CFS is a broad diagnosis which includes a spectrum of clinical syndromes linked to known infections agents including Ross River virus, Epstein Barr virus, Q fever, Lyme disease, parvovirus B19 and toxic exposures such as organophosphates. These syndromes are characterized by neurological, gastrointestinal, cardiovascular and myoarthralgic features. Severe forms can present with paresis, seizures, intractable savage headache, and lifethreatening complications. The renaming to chronic fatigue syndrome in 1988, giving misplaced emphasis to "fatigue" trivialises the substantial disability of ME/CFS which can extend to the wheelchair or bed bound, requiring 24 hour care.
Without a diagnostic test to confirm their clinical state, people with ME/CFS are frequently dismissed with a smorgasboard of psychiatric labels, their acute health care needs ignored. Strong evidence including genetic predisposition, persistent infection and immune dysregulation, in the pathogenesis of these complex syndromes is accumulating.
Barriers to clinical care and strategic research development funding
"Sufferers have all been classified under one diffuse CFS heading. To conduct scientifically rigorous research with replicable findings, including clinical trials, it is essential to know exactly what symptoms are to be examined and as a result identify tight subject cohorts. Using the current fairly amorphous definitions of CFS for research studies will not provide outcomes that would reliably progress medical knowledge to assist CFS sufferers." - Professor Judith Whitworth, Chief Medical Officer, Department of Health and Aged Care 1999
Forum participants unanimously agreed
to adopt the Canadian Clinical Criteria for ME/CFS,
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Clinical Working Case Definition, Diagnostic and Treatment Guidelines A Consensus Document
Access the Canadian Clinical Working Case Definition at National ME/FM Action Network. Overview pp 2-3.
Access Adelaide ME/CFS RESEARCH FORUM REPORT: Index of Reviews and Oral Presentations.
Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285
All material on the site © AHMF