The Guardian - Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be (2019) Frances Ryan

Extract from the above 2001 article:

"Simon Wessely, of the Department of Psychological Medicine at Guy's, King's and St Thomas's School of Medicine in London, is a former key figure in the study of ME/CFS who has felt the heat and largely backed out of the kitchen. Last week he wrote a powerful commentary in the prestigious Journal of the American Medical Association, pleading for the schism within the "ME community" to be healed in the interests of finding answers for patients.

His piece accompanied a major review of all the treatments for ME/CFS that have been studied by scientists in clinical trials. It found that there was very little good quality evidence to support any of the drugs, alternative therapies or other treatments offered to sufferers, but tentatively suggested that two essentially psychological interventions - cognitive behavioural therapy, which is a form of counselling, and graded exercise therapy - were so far the most effective.

Professor Wessely urged patients, campaigners and doctors to come together, welcome the review and coordinate further efforts to help people with the condition. If they didn't, he warned chillingly, increasing numbers of doctors were likely to disengage from a fraught field. "There are many who have found themselves increasingly vilified and, as a consequence, have joined the ranks of others who have been abused and intimidated for producing research unpopular to powerful special interests," he wrote..."​

18 years later - yes, 18 years - it's like being stuck in Groundhog Day.

 

Interesting to see that SW regards us as a powerful special interest group. God knows how we would fare were we weak.

 

The last link in the third paragraph is to a 2016 blog post by the Director of the Centre for Welfare Reform, all about the "In the Expectation of Recovery" report.

 

Michael Sharpe is not a psychologist, he's a psychiatrist (medical doctor) so his regulator would be the GMC. I don't think the GMC is usually interested in dealing with "social media" cases like this. You would need a person who is actually a patient of the doctor to complain that they have been harmed.

 

Indeed.

September 2001 was just a few months away from publication of the CMO's Report (January 2002), so SW and colleagues had much to feel anxious about that year.

 

Crawley also said she left the field. Still publishing, still well-funded (and still unaccountable).

The laziness of most journalists covering this story is seriously at a 11/10. In some cases the same publication published contradictory accounts without skipping a beat. Even being showed relevant information that directly contradict the premise they still knowingly promote a misleading account because they take Sharpe's claims at face value, something that fails the first class of journalism 101.

Shameful.

 

Somebody should set up an online counter - "Number of years since Simon Wessely REALLY retired from ME research, whatever he claims".

Every time he publishes, we reset it to zero.

 

I was more dreaming of the unlikely possibility that his peers and colleagues might get so disgusted with his behaviour that they try to reign him in, guess I'd need to find the right parallel universe where that might happen.

 

Shame it has to be about Rod Liddle, he'll love it and it'll give him something to bounce back off. Media people talking about media people in the media.

Still, Frances Ryan did what she could and who knows, it may end up being more effective than an analysis of the facts around ME and Michael Sharpe, given the crazy way this circus seems to work.

That's a nice idea, unfortunately it will probably remind somebody of the Westboro Baptist Church's website which shows the number of days someone has been burning in hell, so it might backfire from a PR perspective.

 

Are you sure? Where was that? Doesn't sound right with MAGENTA and FITNET-NHS going on.

 

I think he sees it as his right to continue with to reign.

Those spell cheques.

 

The PACE manual, authored by Wessely et al, has a published date of 2002. Wessely claimed he took no part of PACE, despite being thanked for his contributions. He had several publications afterward, including many seemingly independent appreciations of PACE, not acknowledging he was applauding his own work.

I remember a Twitter exchange where he denied it, someone showed him something with his name on it, and he just said something like "oh yeah, that, guess you're right". It wasn't an obscure piece of trivia either, he clearly could not have forgotten that (in fact I think it was either about the PACE manual or him being thanked for his contributions on the trial).

It's ridiculous that journalists don't bother doing the most basic research. Those 2 articles don't apply for his work on PACE but the background information was just as weak and lazy as recent coverage. It's all out there and although it would take a real in-depth investigation to get a full understanding, many of us provide some of those details constantly directly to journalists who just ignore them.

 

That's the first time I've laughed all day!

 

Can't remember where I saw it, sorry. But Wessely was working on PACE when he said it in the quoted 2001 article so it's a bit of habit with them.

 

It makes you wonder how he ever found time to listen to patients.

 

I was a bit disappointed by this (I think Frances Ryan writes a lot of really good stuff, especially by the standards of the Guardian, so had quite high expectations). There are good things about it, but also parts that encourage the unhelpful narrative that has already been promoted by Wessely, Sharpe, etc.

Liddle didn't say ME was “all in the mind”, and I'm not sure it's right to imply that's what he meant by “that their complaints about a virus have no basis in fact”.

I don't think this bit is useful: "Crucially, many people with ME believe this research, and the media’s ongoing coverage of it has added fuel to the belief that their illness is not real".

Especially when there was no detailed discussion of the real problems with PACE (although a lot of good stuff was linked to) I'm worried that this is going to encourage readers to think that patients are criticising PACE not because of the real scientific problems but because we're foolish enough to assume that an illness effectively treated by CBT or GET is 'not real'.