There is an ongoing debate in the ME community regarding whether or not sufferers should be encouraged to keep quiet about their plight because certain medical professionals are ‘laughing at them’.
I am disturbed by attempts to silence various forms of expression concerning the suffering of ill people.
One tenet of every profession is to act and behave with integrity and to do no harm, that includes more professions than the medical, for instance social and natural scientists. There is a strong element of accountability that is taught on any decent PhD programme. Ill people do not need to follow the politics of appeasement merely because there is a powerful school of thought opposing them. I have been informed that certain members of the Wessely School integrate blog posts by ME sufferers into their talks or lectures in order to ridicule them. The argument has been made that we should respond to such ridicule by ceasing writing blogs or indeed expressing any opinion that may provide such medical professionals with ‘ammunition’ to denigrate us. If it truly was/is the case that such ridicule occurs and that entire seminar rooms or lecture halls echo with the laughter of members of the medical profession, that is a problem for the medics concerned, not us.
Let us consider for a moment the possibility that some ME sufferers aren’t suffering from biomedical ME but instead have a mental illness (this is a hypothetical exercise based on the unsound diagnostic criteria Wessely et al use). Now ask yourselves how that would justify a group of psychiatrists denigrating their suffering and pain. If we are all mentally ill as these ‘professionals’ claim, how would that free them and their colleagues from an obligation to act with professional compassion and understanding? Integrating blog posts by ME sufferers into talks or lectures to ridicule them is a flagrant abuse of power and a serious breach of ethical conduct and should be reported and investigated by the institutions employing the people involved. As every PhD knows, or ought to know, we cannot say whatever we wish to say in our lectures as we are bound by a strict code of conduct. For some reason, when it comes to ME all bets are off and certain members of the medical profession feel free to ignore all ethical and moral considerations when it comes to dealing with a group of extremely ill patients.
If ME patients feel the need to express themselves, whether via Facebook, Twitter, a personal blog, or any other method of communication, they should be allowed to do so without worrying that their feelings will be ridiculed by people who should know better. They certainly shouldn’t be prevented from communicating their innermost thoughts due to fear or chastisement by fellow ME sufferers who believe the only response is to appease those powerful figures who have caused so much pain and misery in our patient community over the past several decades. Sufferers are effectively further victimised due to their (own) voices and concerns being invalidated; it is their only life and their pain and they are fully justified in making their voices heard in whichever way they can. They are not members of a profession, they are people left to rot.
We should stop blaming sufferers for the lack of funding and political will to do something about this wretched illness, an illness whose treatment, if you can call it that, has been occupied by a scientifically unsound clique whose entire careers are built on denying ME’s existence. The last thing we need is to appease that clique (no, I am not a militant and have never threatened anyone in my life). History has taught us that negotiating with the corrupt and bullying is futile, as reason and rationality do not work in deeply entrenched power hegemonies.
Claudia (PhD and ME sufferer), UttingWolffSpouts