Sunday, March 30, 2008

Hayley in the Financial Times

Hayley of the 25% ME Group has had an excellent letter published in the Financial Times. Before I copy it here, I will explain that 25% of people with ME never get better. They stay extremely ill or their condition deteriorates. Many live in darkened silent rooms for years and are helpless and constantly in pain and usually are too ill to eat and therefore require tube feeding. There was a landmark case in 2006 of Sophia Mirza whose death was recorded by the Coroner as having been due to ME. Her spinal cord was examined by Consultants doing research into ME and they found evidence of inflammation there. Sophia Mirza's terrible story can be viewed here

But to get back to Hayley's letter, here it is, and very well said too.
Way to go, Hayley!

Some false assumptions about ME (Letter published Financial Times 29 March 2008)

From Ms Hayley Klinger.



Sir, Margaret McCartney's article about medically unexplained symptoms contains a number of false assumptions ("If it's in the mind, it's still the real thing", Life & Arts, March 22-23).
First, she claims that myalgic encephalitis is medically unexplained, when in fact there are hundreds of studies demonstrating the physical abnormalities found in ME. What is unexplained is why there is still a debate about whether ME is psychological or physical when there is overwhelming evidence of immunological, neurological, endocrine and cardiac involvement in the illness.

She then makes a leap to claim that "medically unexplained" means that symptoms are psychological, ignoring the rather obvious fact that it actually just means they are as yet unexplained. She credits Prof Simon Wessley with this (old) theory, but psychiatrists have always claimed organic illnesses are psychological until medical science explains them (examples include MS, TB, ulcers and polio).

Worst of all, she then claims that ME patients do not accept a psychological explanation for their symptoms because they think "somehow psychological illnesses are not as real, or as valid, as physical ones". This is a huge mistake - a rather more obvious explanation of the ME patient's opposition is that a cure will never be found if doctors are studying the personality rather than the biology of the patient. If cancer was labelled as psychological where would that leave patients? The outcry would not be due to worries about stigma, but about treatment and cure.

A cursory look at where Medical Research Council funding for ME has been directed might explain why the psychiatric profession has been so peculiarly intent on fostering the belief that ME is a psychological illness - while biomedical study such as Dr Jonathan Kerr's gene research is refused funding and has to be supported by patient charities, the MRC has given £15m to psychologically based cognitive behaviour therapy trials.

Hayley Klinger,
25% ME Group,
Troon, Ayrshire KA10 6HT
25% ME Group

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