AHMF Advocacy Package

Critical Issues for Myalgic Encephalopathy/Chronic Fatigue Syndrome

As stated by Assistant Secretary of Health, Dr Philip Lee, U.S. Chair of Chronic Fatigue Syndrome Co-ordinating Committee (CFSCC), 13 September 1996:

Medical ignorance compounds the serious impact of the disease for people with ME/CFS.

There is mounting evidence that:

Tasks demanding new memory are more sensitive to impaired central nervous system function than well practised tasks, which are least vulnerable. This impacts most seriously on education and specific occupations.

People with gradual onset who adapt to declining health are more vulnerable to misdiagnosis, e.g. depression, school phobia, anorexia nervosa, malingerer.

Management of severely ill patients with ME/CFS presents enormous obstacles and responsibilities. Symptoms of paresis, paralysis, seizures, gastroparesis and intractable pain are dismissed with shifting psychiatric diagnoses such as somatoform disorder, hysteria, Munchausen Syndrome by Proxy. These misattributions place patients at grave risk. Supportive medical practitioners can find themselves unable to access the acute care they feel is required. Carers struggle to cope with medical crises which in any other condition would receive urgent attention.

The gravity of these issues is demonstrated by the fact that those severely affected can face enforced removal to state and psychiatric care.

There is no long term monitoring and no register for the disease. Fatalities are always ascribed to the terminal event; the earlier ME/CFS diagnosis in ignored.

The viewpoint of patients with ME/CFS has been marginalised and often energetically opposed, yet the patients' experience of the disease provides the richest history.


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