"Time for Unrest": ME article by Nathalie Wright

He's venturing into a detailed response for once, so he must be rattled. The only detail he responds to is of course of his choosing, and in a way that shuts down any dialogue on the subject. That's a pity, because there are a lot of other questions people would like a detailed response from him on, and a continuing dialogue, rather than a document thrown from the bunker.

Like all my generation, we had been taught a lot about the “labelling” – namely that the name you give to a condition can contain numerous assumptions about the disorder, which may be erroneous but self-fulfilling.
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Like all my generation? Ah yes, the Harvey Weinstein defence. Those lessons Wessely's generation were taught about labelling must have come in very handy when he orchestrated the press through the SMC to label PWME as death-threatening militant activists worse than anything Afghanistan had to offer. He's very lucky that those names were only erroneous (in fact a court of law found that there was no evidence for them whatsoever) and not self-fulfilling.
Back then I was aware of the dangers of the premature (but exceedingly common) assumption that nothing could be done for ME patients, and would undoubtedly have spoken about why we should try and avoid this. Premature labelling of people as being permanently incapacitated was definitely discussed.
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Twenty-five years later we are still in a position where nothing can be done for ME patients, a situation that Wessely and his gang have played a significant role in maintaining. Is it still premature to say so? Is it still a dangerous thing to say? Dangerous for who? Insurance companies? That nothing can be done for ME sufferers is not an "exceedingly common assumption", but an alarm bell and a call for biomedical research. Unfortunately Wessely & co only saw it as a chance to grab territory and build careers.
 
Poor Wessely, it was all a misunderstanding; he was young, he believed what he was taught about the perils of labelling and he was misquoted by a pesky civil servant.
Of course he's done everything in his power to set the record straight and put things right for PwME since that terrible mix-up, hasn't he? He's been a tireless campaigner for ME rights, benefits and research, he's been our loudest voice, he's our patron fucking saint.
 
I think this is why it's very problematic to level criticism at Wessely without giving context.

The original piece is excellent - but perhaps if I was a layperson, and read SW's response, I'd be inclined to think that he was being fairly reasonable and quoted completely out of context on his work over two decades ago.

The real challenge here doesn't seem to be getting articles that patients agree with (though that is clearly still an issue based on the crap that often pops up on my google alerts), but instead persuading laypeople that there's been some kind of injustice here and that a change (more investment, better research) needs to be made.

How we do that...I'm not entirely sure.
 
chrisb said:
It might be time to look up the direct quotes from that almost contemporaneous lecture at which various comments, generally regarded as disobliging, were made.

For the sake of history, one would be glad to have clarification of the intended meanings.
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I'm sure Wessely has a stock of quotes from the last 25 years that paint him in a good light and allow him to engage in this kind of self-justificatory damage limitation. He's been careful to occasionally say the right thing over the years so that he can always portray himself as on one side of the fence or the other in hindsight.

The trouble for him is that for every favourable quote / action / interpretation he can point to, there are about another hundred quotes / actions which show him for what he is, so it just won't wash. Plus the trouble with PWME is that many of them have had nothing else to do but document, record and remember from their beds. He has created an army of involuntary historians and record-keepers who can show him up for the hypocrite he is every time. And now that journalists are interested, they know where to come. We have a propaganda machine that the SMC can only dream of, plus the added advantage that it's all true. Every time Wessely opens his mouth he puts a couple more feet in it, and more and more people are noticing.
 
Back then I was aware of the dangers of the premature (but exceedingly common) assumption that nothing could be done for ME patients, and would undoubtedly have spoken about why we should try and avoid this. Premature labelling of people as being permanently incapacitated was definitely discussed.
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And most definitely proved something could be done: by making their lives harder and endorsing treatments that best case made no difference and arguably made their condition much, much worse.

Well done!

ETA - bolding is mine
 
Like all my generation, we had been taught a lot about the “labelling” – namely that the name you give to a condition can contain numerous assumptions about the disorder, which may be erroneous but self-fulfilling. This is still an issue today. One of the core principles of the “Recovery Movement”, currently the dominant paradigm in managing long term conditions and disability, is avoiding this.
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Is he saying that he now believes the 'Recovery Movement' of managing long term conditions is the correct approach for ME? Does it mean that we have to be disabused of our 'false beliefs' that we are unlikely to recover, and get on and exercise ourselves well again? Set targets and goals, increase activity, blah, blah, blah... That's so cruel to people for whom increased activity is likely to cause relapse. Sets us up for failure and self blame.

I seem to recall reading that Care agencies are being told to focus on helping clients become self managing and reducing the need for care by focusing on recovery. How does this help someone with severe ME?

Can anyone enlighten me on what the 'Recovery Movement' is?

Edited for clarity.
 
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TiredSam said:
He's been careful to occasionally say the right thing over the years so that he can always portray himself as on one side of the fence or the other in hindsight.
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Like this one from EC:
We need to say "Enough is enough." We are going to support those doing research. And we're going to say to those who try and stop us, "We want research into treatment and into biology."
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https://www.s4me.info/threads/esthe...upting-your-view-of-me.286/page-16#post-26981
 
Liv aka Mrs Sowester said:
Poor Wessely, it was all a misunderstanding; he was young, he believed what he was taught about the perils of labelling and he was misquoted by a pesky civil servant.
Of course he's done everything in his power to set the record straight and put things right for PwME since that terrible mix-up, hasn't he? He's been a tireless campaigner for ME rights, benefits and research, he's been our loudest voice, he's our patron fucking saint.
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This is a key factor. Of all the people best placed to set the record straight, right the wrongs done to PwME, and ensure a much more hopeful future ... it's him! Somehow that doesn't seem likely.
 
"One of the core principles of the “Recovery Movement”, currently the dominant paradigm in managing long term conditions and disability, is avoiding this."

This is the worst sort of sound bite blather we get these days. Who cares what is a 'dominant paradigm'. Is the right thing to think what it is cool to think? Judging from Wikipedia the 'paradigm' is just endless meaningless drivel of the sort psychologists are good at. Completely devoid of science.

One day Simon Wessely might come to realise he has a problem with understanding real people. He may understand other politicos with a mind set like his own but real ordinary people seem beyond his ken.
 
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