"Time for Unrest": ME article by Nathalie Wright

It is one thing to avoid labelling a person - when I was younger this term meant (still may mean) applying a label which might be seen as derogatory or stereotyping and would be likely to lead to the person being discriminated against.

It's altogether another denying them of the correct diagnosis, research and treatment and the support they need.

The Recovery Movement can easily be and has been used to deny people of the support they need.

What next.... When will the start treating the elderly frail and infirm this way? If they haven't already.

 

I think it explains where PACEs "recovery but not actually physical recovery" comes from.

 

Ye gods ...

... even to the extent of wish-list outcomes?

 

The Norwegian "patient"organisation Recovery Norge (which promotes Lightning Process and was just invited to give lecture for the national center of expertise for CFS/ME) has nailed this. Several of those who have declared themselves recovered by their own efforts via Recovery Norge are still so sick that they need benefits, yet fit as a fiddle at the same time.

From their presentation on Facebook
We represent those who have become healthy with "unexplained" disorders such as chronic fatigue syndrome (ME), tinnitus, fibromyalgia through techniques or treatments that deal with thinking, action and / or interpersonal interaction.

 

I can see many things, negative outcomes, that that recovery model (at least the bit highlighted by @Andy 2 posts up) could be used to justify, I'm not sure it's any different, in possible outcomes, than the "God made me do it" approach to life.

But if I was to post examples...........people with helicopters might damage my windows, and I need my windows, so I won't

 

She could maybe ask the Duchess of Kent what it was like being mis-diagnosed with ME when she had coeliacs disease

Reports by the BBC stated that the Duchess suffered from coeliac disease and Epstein-Barr virus, whose symptoms resemble those of ME or chronic fatigue syndrome, while the Mail on Sunday reported that she suffered from depression. By 1999 she had apparently completely recovered from chronic ill-health, and when asked by the Daily Mail what had suddenly changed, she answered, without elaboration, that she had been suffering unknowingly from coeliac disease.[15] She stepped down from her role as head of the M.E. Society in the UK after this new diagnosis, and has since energetically worked with various charities and schools. When asked by the Daily Mail in 1999 about her long history of illness, her reply was simply that "none of us goes through life unscathed".[14]

 

Do you have a link for that piece?

It's OK - I found it: https://en.wikipedia.org/wiki/Katharine,_Duchess_of_Kent

 

Back then??!! Back then when?

What about having an active role in the PACE trial and to date the defense of it, what about the Times article with made up email art work declaring the patients militant purveyors of death threats, what about saying you feel safer in Afghanistan than dealing with ME patients, what about saying the PACE trial is a thing of beauty and claiming changing the recovery definition was ok otherwise less people would have met the recovery definition and on and on.

What a fool!

 

Can someone reply to the tweet with this?

 

Im happy with that. One thing though the last sentence should read "less people would have.....instead, of "less people would not have."

 

Well that sounds fair enough. If I had a mental disorder or substance dependence I might be interested. But why does Mr Wessely think this is relevant to people with ME?

Unfortunately he didn't. He is a politician through and through, but realised that it's easier to get ahead by being a politician pretending to be a scientist in the field of science. That way he doesn't have to compete with the big boys in Westminster, and the scientists / patients don't even see him coming until it's too late.

 

fewer not less

sorry

eta in reply to @large donner

 

What the hell does this have to do with the "activities measured" in the PACE trial the claimed recovery results and the philosophy of causation used for such trials?

 

Simon Wessely claims that his views are misrepresented and that once again he is the victim of a terrible misunderstanding. He is the former President of the RCP and current President of the RSM. He has the highest profile of any MECFS researcher/clinician in the world. He is the recipient of numerous awards and honours, he has hosted hundreds of lectures, and is the author of countless papers. His story was featured on the front page of the Sunday Times Magazine, he has been responsible for countless articles in newspapers, and he has been interviewed on various radio broadcasts. And yet he claims he has failed to make himself understood – not just once, but again and again and again over a period of decades. Even if one were to accept his narrative one would have to conclude that he is totally and utterly incompetent, and guilty of causing harm to hundreds of thousands of patients through his inability to communicate properly.

My own view is that he is guilty of causing harm, but not because of his failure to communicate. On the contrary, I believe that he is an expert communicator, who has been astoshingly effective at propagating his poisonous, pseudoscientific ideas through ruthless, cynical and exploitative means.

Edited to add: And now he seems to be employing those same expert skills to try to re-write his own history. This may be seen as a positive sign that he realises he is losing the argument, but he must not be allowed to get away with it. He must must be held to account.

 

It would be great if just nobody clicked the link. 'Nothing to see here..'
SW's little pdf of horrors isn't in a national newspaper, Natalie's article is.

Natalie provides links to references which some people who don't know about the ME story may click on and read. SW provides a slippery mess.

He is outrageous and culpable and prospering to this day, but pfft!

Somebody nudge me when he retaliates in The Guardian.

 

https://twitter.com/user/status/950781238356295680

 

So he included no attempt at a defence of PACE?

 

Anil tweeted this second letter, which Wessely sent Aylward in October 1993:

https://twitter.com/user/status/950277327556050945


October 1993:

 

There is actually a gain of truth in Wessely's argument in that letter. But by golly does he screw up on the way he develops that argument. And again, he seems to have forgotten who this is all for - some annoying people called patients. Not in fact, psychiatrists, so that they can mark out their territory on the croquet lawn. If you cannot help people at least try not to make them angry and miserable.

 

@Liv aka Mrs Sowester, but is he even saying that he was wrong to believe what he was taught about the perils of labelling? I thought what he proceeds to write in that piece doesn't suggest he views it was wrong to believe the theories in the Recovery Movement, as he goes on to claim that CBT did help some pwme (putting aside as Dr K Geraghty tweeted today his selection of patients for his CBT trial didn't seem to fit ME patients)? Also as people have said in this thread what the heck has the theories of recovery movement got to do with a physical disease, although I note he says it is used for all long term conditions and disability.