AHMF: Advocacy package: Critical issues

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:

CFS is a serious and legitimate diagnosis;
the spectrum of disease extends to the wheelchair bound;
recovery is slow and uncertain for many;
scientists need to learn more about reactivation of latent viruses and molecular interactions between the brain and immune system;
CFS is devastating to many who have it.

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

There is mounting evidence that:

early diagnosis and aggressive rest, particularly in the initial stage, can have a crucial influence on duration, severity and recovery;
each person with ME/CFS (child or adult) has to find his/her own safe limits and can not have activity, mental or physical, prescribed by others;
mental activity can be every bit as detrimental as physical exertion.

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.