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
Utting-Wolff Spouts 
Well said Claudia. What the Pinocchio Psychiatrists are doing constitutes serious professional misconduct and as long as I can say anything about their very unprofessional behaviour, ignoring all the evidence that ME is a severely debilitating neuro immune disease, leaving severely ill people to rot, ridiculing us etc I will do so
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I was shocked to the core, to come across an American Nurse’s site, where they had posted a video of my wife, who has Very Severe ME,so they could mock and ridicule her shaking, suffering, tormented body. The stupidity, cruelty and hostility of the medical profession towards ME, so carefully engineered by the psychiatric lobby, needs to be unmasked and those who have spent their careers spreading misinformation and lies, held to account. That goes without saying really. What I find more disturbing is that anyone would question for one second whether or not we should be speaking out. Another superb, thought-provoking article Claudia, especially your last line :”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.”that is spot-on; Linda and I like to say that you cannot negotiate with deathmakers. Thank you.
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That is absolutely appalling Greg, I’m so sorry. Surely doing something so abhorrent must leave them open to legal action? I thought I’d heard it all concerning the behaviour of certain members of the medical community towards ME sufferers but what they did to you and your wife was evil. They certainly should be held to account, preferably in a court of law. Thank you for your comments on the article, they are much appreciated.
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Oh dear this is appalling. It leaves me with the heartsinking feeling “Has anyone made fun of my blog?” if it is true it should be a professional misconduct issue. How good is the evidence though? Is this just a rumour or do you have contact with someone who has witnessed it first hand?
In terms of what we say publicly online I think the arguments are more nuanced. Perhaps there’s a need to separate out deliberate Awareness raising from community support. In a political justice sense we shouldn’t be silenced by such misuse of power. Everyone should get a blog as a response! Write to the papers. Write novels. Create documentaries. Make a noise.
On the other hand, I think sometimes we need to be more savvy about the content of what we say that anyone can read any time. Perhaps we should proof read posts imagining that this type of psychiatrist will read it. I do think there is some room for some of the emotional support we need from each other going on in closed groups and private messaging if you don’t want these people to read it. Also some infighting must come across really badly when people stumble across it online.
We could be at the point to disengage from psychogenic arguments and go silent on that particular bug bear. There’s enough biomedical research now to ignore this talk online (whilst engaging maturely with truly BioPsychoSocial models and *appropriate* psychological support for the emotional toll of a severe chronic illness). I don’t think people with MS have to waste so much energy arguing that there is something wrong with them.
Potentially everything we write online is shaping other people’s perception of ME, we need to be considered about what we say (eg if this is the 1st they’ve heard are we the ones introducing the idea that there isn’t a biological basis?) I’m suggesting that we should be deliberate. This is very different from a response of silence. Then disbelievers would control perceptions of us which is a dangerous scenario. There’s more of us and we spend more time online. It’s just about the only thing that is stacked in our favour!
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Thanks for your comment. I used to cringe at some of the stuff I read by sufferers but as I pointed out in my piece, I do not think it is up to me or anyone else to censure forms of expression. Yes, some may be detrimental to our ’cause’ but it has been a lost cause for several decades and why try to change or impact someone’s perception who is not in the least interested in redressing the awful medical and social situation ME sufferers find themselves in? One of my key points here is that medics are a professional body whereas ME sufferers are left to rot. They are let down by the same professionals who mock them, so why is it the sufferers should be bound by some sort of code of conduct and further diminish themselves? As for the veracity of the claims made, I wrote ‘if this is true’, thereby indicating I am not privy to first-hand information (though note Greg Crowhurst’s comment above) but sufferers use such claims to shut up co-sufferers which is unacceptable to me. However, there is plenty of written evidence, published in acclaimed papers and journals, that the Wessely school of thought offers little more than contempt for ME sufferers. You make an important point, I too wish I could fully concentrate on the brilliant studies that are being carried out were it not for the fact that the psych brigade will not go quietly. On the contrary, they seem to step up their vile game the moment a good, solid study is published. As for in-fighting, again, we are not a professional body but hundreds of thousands of individuals, so I find it understandable that tempers flare, why should that be held against ill people? I’d use that very argument to say all the more reason for psychiatrists with vested interests to be booted out of this whole field and to let biomedical researchers do something useful with the funding the former seem to be able to hog time and again. If only they could conduct their research unimpeded there would not have to be any in-fighting as we could leave our houses and enjoy life, including enjoying paying jobs.
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I agree that patient behaviour is completely separate an issue from professional conduct. If we did form a Movement with a code of conduct then people would be free to join it or not anyway (probably forming the People’s Front of ME as a break away from the ME People Front!).
I’m not suggesting anyone stops expressing their frustrations. I was trying to make a point about context. Sometimes online we can do the equivalent of going into the city centre with a loudspeaker when we actually just wanted a supportive chat with close friends in our living room. If someone *wants* to go into the city centre with loudspeaker that’s fine if they made the deliberate choice that this is what they want to say to that audience.
Like a lot to do with perception of ME this dilemma feels like a double bind. We stay silent and misperceptions are spread. We speak our minds about how hard this contested illness is to live with and we sound a little crazy.
Maybe in 3 years we’ll be offered rituximab and it will solve the problem for most of us both in terms of prejudice and symptoms?
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Reblogged this on Short Blogs for the Distracted……… and commented:
Great blog absolutely we need to be able to speak out about our illness not be ridiculed into silence ..
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These “professionals” should be booted out of their “profession.” Am I wrong, or have I read that even Wessely has backed away somewhat from his hard-line stance?
Not wanting to rehash all the above comments, I can only wring my hands in thought, trying to get my mind around the increased emotional suffering experienced by the patients, due to the ignorant, self-serving and biased announcements.
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I don’t think Wessely’s backed away from anything. He’s had a tendency to say different things to different audiences and now that so much serious research is coming out backing the biomedical basis of ME he’s been trying to cover his back but I’ve no doubt he comes out with the same abusive rubbish when meetng with his psyche colleagues.
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This is what SW wrote on Twitter, 2:51pm – 4 Jul 15:
“@TanteRos No shift. any promising treatment, be it CBT, GET or rituximab, needs a big trial. First two have them, third not yet
https://mobile.twitter.com/WesselyS/status/617314767812870145
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That’s a reasonable assumption.
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Wessley and cohort have destroyed the lives of thousands with their twisted idea’s.
The consequences are unforgivable.
Karina has been turned into a living vegetable by Fink.
Mothers and children with ME were/are living in fear of child protective services — the same kind of fear Jews were experiencing when they were expecting anytime that the SSS will knock on their door to take their children away.
Instead of being helped by doctors and our society, mothers were falsely accused of Munchhausen proxy, vulnerable, sick children were removed from their homes and forced to undergo miss-treatment like CBT/GET — traumatized and made sicker by the medical establishment which were supposed to protect them.
Mothers have been forced into exile to protect their children from such cruelty.
By shushing the reality of ME CFS you are helping to cover up a “medical holocaust”.
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Claudia, thank you for reminding us that silence is not an option.
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