The ME/CFS Society of NSW Inc.

Symptoms
Major symptoms of ME/CFS include severe prolonged fatigue, post-exertional malaise, sleep disturbances, pain syndromes and several of many possible disturbances to neurological and cognitive function including perceptual, sensory and motor problems, poor concentration and short term memory, autonomic nervous system problems such as orthostatic intolerance, breathing and heart irregularities and dysfunction of the gut, neuroendocrine disturbances such as changes to the control of body temperature and marked weight changes, and disturbances of the immune system such as 'flu-like symptoms and new sensitivities to food, medications and/or chemicals.

Underlying Pathology
The underlying pathology of ME/ CFS is not yet completely understood. For this reason, there is no single test that can differentiate a person with ME/CFS from a healthy person. Research is currently directed towards further understanding the roles of persistent infection, neurological abnormalities, immune system abnormalities, genetic factors, cardiac abnormalities, gut dysfunction, metabolic disturbances, stress and toxic exposures in causing and/or perpetuating ME/CFS. There is no known cure for ME/CFS. However, various published sets of ME/CFS management strategies have been found to be helpful.

The Name "Chronic Fatigue Syndrome"
ME/CFS is not synonymous with the illness symptom known as Chronic Fatigue (CF). Chronic Fatigue Syndrome (CFS) is too readily confused with CF (a psychological illness) by many health professionals and non-medical persons alike. Additionally, the term CFS focuses on a single symptom, fatigue, which even healthy people complain of and will believe is easily fixed by a good night's sleep or holiday. Fatigue that is chronic, that is, of greater than six months duration, is a characteristic of many known disease states including cancer. CF is far more prevalent than ME/CFS and a large percentage of clients presenting to a typical general medical practice will suffer fatigue. The international ME/CFS community is currently debating a name change to avoid the term CFS which was coined in the late 1980s. This focus of a name on fatigue, rather than on an underlying pathology or symptoms which many healthy people never or rarely experience, and which are not easily corrected, such as temperature dysregulation, photophobia (increased sensitivity to light) and myalgia (muscle pain), tends to trivialise the illness of CFS.

Research - The Wichita Study
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%. In the Wichita Study, 33 997 households were contacted by telephone. Those complaining of chronic fatigue were followed up by researchers for further testing including laboratory work, psychological and sleep studies. Based on selecting subjects who matched the ME/CFS research criteria published by the US Federal Centers for Disease Control (CDC), the overall prevalence of ME/CFS in the general population was determined to be 235 persons for every 100,000 (0.235%). This is 24 to 59 times the minimum prevalence rate estimate of 4 to 10 per 100,000 published by the CDC in 1994 ("The Facts about Chronic Fatigue Syndrome"). No research to match the Wichita study is currently being undertaken in Australia.

Gender Prevalence of ME/CFS
Confirming prior prevalence studies, the Wichita study found that the incidence of ME/CFS is higher in women than in men. In Wichita, 373 women out of every 100,000 (0.373% of the population), but only 83 men out of every 100,000 (0.083%) have ME/CFS. Among white women, incidence steadily increases with age, reaching its peak between the ages of 50 and 59, when it affects 863 of every 100,000 - a stunning one in every 116 women. This incidence is much higher than that of cervical cancer or tuberculosis, but is lower than the incidence of breast cancer and diabetes. This gender imbalance is reflected in NSW ME/CFS Society statistics: incoming phone-calls to the Society average 79% female and 21 % male; members are 77% female and 23% male. The Wichita Study concluded that ME/CFS is "a major health problem".

Some members of the ME/CFS Society of New South Wales have been affected by ME/CFS for most of their lives. They also often have lived with the illness for many years prior to diagnosis. After serving in World War II, one member had the first of three serious episodes of ME/CFS requiring hospitalisation at the age of 18. He was not diagnosed with ME/ CFS until 1992. Another member is a mother aged in her 80's whose daughter fell ill at age 20 in her first year at university. The daughter was diagnosed at 29. 31 years later, she is still home-bound and her mother is still her primary carer.

Severity of ME/CFS
Like all illnesses, there are degrees of severity in ME/CFS. The most vocal ME/CFS advocates are those who are carers, or who have recovered, or who are themselves mildly to moderately severely affected. They have the energy to fight for the rights of all who are affected by ME/CFS. People with very severe CFS are invisible to the public. Many cannot get out of bed or are house-bound and rarely venture outside. Their stories do not often get told because they do not have any spare energy to write or publicise them.

Many people with ME/CFS cannot work and therefore become financially compromised. Yet they need more money to discover what is wrong with them and to pay for treatment. Too often, they also face unsympathetic and sceptical attitudes of other family members, doctors and the general public. The symptoms of ME/CFS themselves are very debilitating and distressing. Yet a large proportion of the distress of a person with ME/CFS can also be attributed to the negative and unaccepting attitudes of others.