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ME sufferers are too ill to get their voices heard
North Street Downend Bristol
There is a specially cruel irony about the play on the words of the series title containing a programme broadcast recently about medically unexplained symptoms (Thinking Allowed, BBC Radio 4, July 1) because those most likely to be able to contribute the best thinking aloud will be least likely to be allowed to do so.
Listeners may have been left with the erroneous impression that there is no alternative to the views expressed by the contributors about "unexplained symptoms" and "heart sink patients", phrases with which ME sufferers are familiar.
Firstly, not all doctors' hearts sink when these patients come through the door. Some find them intellectually and professionally challenging and they are sympathetic to them, while they are searching for solutions and offer the best support and care they can in the meantime.
So why do the other doctors' hearts sink? Perhaps they are unable to admit ignorance, which the others freely admit, without any embarrassment or inadequacy.
Some symptoms may have a known medical cause, such as disease or accident. But when the cause of the same symptoms, for example aches, lack of stamina, cognitive difficulties, and dizziness which are all characteristic of ME (Myalgic Encephalomyelitis), is not so certain, why do some doctors assume that there isn't a medical explanation at all? And, further, that these symptoms, must be of a psychiatric origin, when there is no previous history of psychiatric illness?
Here's the vicious circle: most people with ME are too ill to speak for themselves. Those who are able and prepared to do so are often deterred by those who might find it an embarrassment, even a threat to their status and employment but can often use authority and financial backing from insurance and pharmaceutical corporations to deride what they have to say.
Those who have done research, been influential in working groups, or are government advisers are the ones regarded as "experts" and invited on to the programmes. And they are rewarded with ever-increasing resources.
Those who don't get money for their research because it has already been spent on management, not exploratory, techniques are not be invited.
Their views are not heard and it may be assumed that they do not exist or they represent minority views because they don't get money for research.
Unless researchers into ME ever break this monopoly of funding allocation, they will have to scratch by on charity, delaying any effective treatments or possible cure. And they say their hearts sink!
(Dr) John H Greensmith
ME Free For All.org
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Tuesday 14 February 2012
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