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Adelaide ME/CFS Research Forum report
Saturday 12 May 2007
A report by Colin Neathercoat of the ME/CFS Research Forum, The University of Adelaide, 26-27 March 2007:
Post-Mortem Protocol for Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS)
Clinical and research specialists from the USA, Europe and Australia attending the ME/CFS Research Forum have begun the process of developing an international post-mortem protocol for the disease ME/CFS. The protocol will guide the retrieval and storage of key tissues and organs affected in ME/CFS, in particular the brain and spinal cord, for future pathological examination.
Dr Abhijit Chaudhuri, Consultant Neurologist, Essex Centre for Neurological Sciences, UK: “Disease is characterised by pathological changes in the tissues of those affected. We have previous evidence of brain and spinal cord abnormalities in ME/CFS patients and establishing protocols and international collaboration is a logical next step in furthering our understanding of the disease.”
Participants examined research evidence for the role of persistent complex intracellular pathogens including Q fever, Ross River Virus, Rickettsia and HHV-6/7 in the development and perpetuation of ME/CFS.
Dr Daniel Peterson, Medical Director of the Whittemore Peterson Neuro Immune Institute, Nevada USA: “Clear cut evidence now exists of antecedent infection with these agents in sub-groups of ME/CFS, presumably through mechanisms of immune perturbation.”
Evidence was presented of severe gastrointestinal compromise in ME/CFS including loss of mucosal surface integrity and bacterial colonosis.
The evidence base for ME/CFS research has been seriously distorted, greatly hindering understanding of the disease. Amorphous definitions have contaminated study cohorts and corrupted research data leading to misdiagnosis, false psychiatric attributions and the use of inappropriate treatments. The research group strongly recommended the international adoption of the 2003 Canadian ME/CFS Definition and Guidelines for Medical Practitioners.
Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, University of Sunderland, UK: “There is a compelling need to identify and characterise sub-groups of ME/CFS associated with immunological, inflammatory, neurological and other biological markers to accelerate our understanding of the disease and the development of appropriate treatment protocols specific to each of these groups.”
Participants were also briefed on the establishment of the Whittemore Peterson Institute in Nevada, a unique dedicated ME/CFS research and treatment development centre offering comprehensive care for people affected by the disease.