Dead But It Won’t Lie Down

Dead but it won’t lie down: The myth that ME (Myalgic Encephalomyelitis) = MUS (Medically Unexplained Symptoms).

(I did not write this article, but the author (who wishes to remain anonymous)
has given me permission to put it on my website.)

How the myth began

Governments in the 1980s, confronted with numbers of people being diagnosed with ME, were concerned about the financial impact of the condition. The possibility that psychiatrists could offer treatments such as talking therapies, graded exercise or antidepressants, seemed a comparatively inexpensive way out. The idea of dealing with ME as a psychiatric rather than a physical condition was helped by an article in The Times which used the term “yuppie flu”, a term which somehow impressed itself on many minds. The use of the term “chronic fatigue” has also both trivialised and confused the situation. After all, chronic fatigue is a symptom of many conditions, and is hardly a description of the many serious symptoms of ME.

How the myth has been perpetuated

The very broad criteria used by some in diagnosing ME resulted in a mixed bag of conditions being lumped together: some physical, some mental, some serious, some less so. With such an assortment of patients to treat, a reasonable number could be relied on to improve with the “treatments” on offer. The fact that these recovered patients never had the actual illness known as ME in the first place was disregarded or not understood.

Why the myth should now be buried

Over the years there have been those who have dedicated their time and their medical knowledge to understanding this illness. Able by their medical experience to recognise a serious physical condition, they have also been able to understand some of the physical causes which must lie behind the many symptoms. Their belief in what patients were telling them and their persistence in seeking answers has been the one ray of light in a very dark tunnel for those who have been ill for years or decades, without help and support. The good news is that science is now filling in the gaps in knowledge. Excellent research at Stanford University has shown the failure of the body’s energy production system, making exercise therapy both useless and dangerous. This is very much a work in progress, but there is more than sufficient evidence already of a very serious physical disease for the MUS myth, as far as ME is concerned, to be buried as deep as possible.

© September 2019.

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