The ME/CFS Society of NSW Inc.

Myalgic Encephalomyelitis (M.E.), also referred to as Myalgic Encephalopathy, Chronic Fatigue Syndrome (CFS), Chronic Post-viral Fatigue Syndrome and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) is a serious, very debilitating and complex illness that affects multiple systems in the body. Although chronic fatigue (CF) is a very common health problem, ME/CFS affects only about 0.2-0.4% of the population (based on a recent high quality US study). Since 1969, the World Health Organisation's International Classification of Diseases has listed ME/CFS with Post-Viral Fatigue Syndrome as a disorder of the neurological system (code G93.3). As the underlying pathological basis of ME/CFS is not yet completely understood, there is no single test to determine if you have it, and no known cure. Research is currently directed towards understanding the roles of persistent infection, neurological abnormalities, immune abnormalities, genetic factors, cardiac abnormalities, gut dysfunction, metabolic disturbances, stress and toxic exposures in causing and/or perpetuating ME/CFS.

Recognition in Australia

ME/CFS is recognised by Australian authorities. In 1988, through its NSW health department, the state government of New South Wales provided its first grant to the Society, which has since been successfully renewed each triennium. The Australian Repatriation Medical Authority in 1995 registered ME/CFS under the Veterans' Entitlements Act 1986 subsection 196B(2): "Being of the view that there is sound medical-scientific evidence that indicates that chronic fatigue syndrome and death from chronic fatigue syndrome can be related to operational service rendered by veterans" (Statement of Principles Concerning Chronic Fatigue Syndrome, July 18 1995).

The Cost of ME/CFS

ME/CFS is expensive for both the national economy and the patient. A working group funded by the Commonwealth Department of Health and Ageing wrote: "Based on a conservative assumption of a community prevalence of CFS of 0.2%, this implies an annual cost to the Australian Community of $525 million" ("Chronic Fatigue Syndrome Clinical Practical Guidelines 2002" The Medical Journal of Australia 6 May 2002). Estimated direct costs (diagnosis and management) incurred each year for each Australian ME/CFS case were $2,734 in 2000/01 dollars but $13,471 when indirect costs (lost productivity) were included. All costs are mainly borne by people with ME/CFS and their carers.

Research Needed To Overcome ME/CFS

For reasons of economic necessity and social justice, it is vital that remedial strategies to overcome ME/CFS be discovered. The most meticulous and high quality ME/CFS prevalence study to date was published in July 2003. Referred to as the Wichita Study (Reyes M. et al, "Prevalence and Incidence of Chronic Fatigue Syndrome in Wichita, Kansas" Archives of Internal Medicine 163:1350-1536, July 14 2003). The Wichita Study identified that incidence increases with age but averages 0.235%. Therefore, as the average age of Australian and world populations increases, so will the frequency and economic impact of this illness. Based on the 2001 Australian Bureau of Statistics "Census of Population and Housing" and allowing for two carers per ill person, it is estimated that more than 44,900 persons in New South Wales, and 133,750 nationwide, experience the challenges of this illness on a daily basis. No research to match the Wichita Study is currently being undertaken in Australia.