Be aware

This week is International Myalgic Encephalomyelopathy/Chronic Fatigue Syndrome and Fibromyalgia Awareness Week.

Be aware.

To be frank, I’ve always had mixed feelings about awareness week. Don’t get me wrong, I think it’s a wonderful idea to bring such a totally misunderstood and thoroughly debilitating illness to the limelight to raise awareness within a wider community that believes only what it sees, however at the same time the effect on sufferers and their family is one of ramming home the fact that such an illness exists within their personal consciousness.

Here’s some stats to give you an idea of where ME/CFS and Fibromyalgia fits into the scheme of things:

• An estimated 0.2% to 0.4% of the population have ME/CFS; this represents 40,000 to 80,000 in Australia.

• “Chronic fatigue” is a symptom, not a disease or illness in and of itself; “chronic fatigue syndrome (CFS)” is an illness, not a symptom by itself. Chronic fatigue is prolonged exhaustion for a period of at least six months, and is not alleviated by rest or sleep. It is not related to the patient’s level of activity. Chronic fatigue is only one of over 120 possible symptoms of ME/CFS. Chronic fatigue is a symptom of many other illnesses, including cancer, diabetes, rheumatoid arthritis and multiple sclerosis.

• In 2002, 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.”

• Psychological features play no role in the development of ME/CFS following a known infection (most cases of ME/CFS are a result of infection). The absence of a link to psychological illness was a 2004 finding from the large scale Dubbo (NSW) Infection Outcomes Study funded by the US Government. The strongest predictor of development of ME/CFS following infection is the severity of the acute illness at onset.

• The severity of ME/CFS can vary from mild (reduction in some activities) to very severe (bed-bound or hospitalised); “one in 3000 Australians is severely ill with CFS” (Prof John Dwyer, May 2004). Recovery from ME/CFS is prolonged (2-7 years) and commonly follows a pattern of remissions and relapses.

• Misdiagnosis of ME/CFS is common, as many symptoms overlap with other illnesses. Up to 50% of patients presenting to a Sydney CFS clinic have been misdiagnosed (Prof John Dwyer, May 2004) and 23% of all ME/CFS patients will eventually receive an alternative diagnosis (Prof Anthony Komaroff, Harvard University, October 2004).

You can find more information, or make a donation, at the NSW ME/CFS Society’s website: www.me-cfs.org.au.