Article: 'Is standing up for expertise a fool’s errand?' - Simon Wessely still being portrayed as the 'victim'

Wessley is an expert in PR, whenever the methodology of his field is shown to be poor quality, he rebuts with irrelevant, yet persuasive arguments about how patients actually are trying to avoid mental-health stigma and why we believe in something called "mind-body dualism", that is a dangerous attack on the legitimacy of the field. Then he cites being subject to abusive comments on the internet as being unique to him, despite this being common across much of the internet (and especially if you are a woman with a bit of fame). Then again, perhaps he believes that since he is an upper middle class white man, that he should not be subject to the sort of abuse on the internet that anyone else who acquires a bit of fame is subject to?

(Of course anyone who actually listens to patients knows that the criticism of cognitive/behavioural approaches derives primarily from patients finding that they don't work as claimed, rather than any fear of stigma of mental health conditions.)

 

Ean Proctor in his own words...

https://www.youtube.com/watch?v=cDeu_OlMivU

The video was made in the early 90s (it says that Virginia Bottomly was health minister I think that was early 90's?) so the picture quality isn't great. There is a neurologist talking shite at the beginning. Ean's bit comes a little later.

It doesn't say anything about Wessely & personally I don't remember anyone saying that SW was the person that actually put him in the pool. But since SW mentions it I thought it would be helpful to show Ean's version of the story. There is no detail about who the Drs were.

Also Ean does not say he was 'thrown' into the pool, but that they 'let him go' in the deep end.

It's a terrible case. What's even worse is that in nigh on 30yrs... nothing has changed.

Thankfully Ean was clearly much better at the time of the video being made - I wonder whether he just gradually improved or?? & how he is now, I wish him well wherever he is.

 

That video is very valuable. Peter Hudgson is unusually frank, but clearly sets out the problem, which SW always seeks to sidestep. They suddenly started diagnosing people with all manner of problems as having ME, and thought those patients were typical of the condition. They even invented the Oxford Criteria to include them.

It is interesting to tie together various threads. I have seen somewhere that SW's involvement in the case was in collaboration with the guy, I temporarily forget his name, who introduced Pervasive Refusal Syndrome. One can also see the influence of M and B and Thomas in the suggestion that the paralysis was simulated or volitional.

I sometimes wonder whether it is a failure of analysis that leads to SW misunderstanding people's opposition to him. I'm not sure anyone seriously suggested he threw EP into the pool. He was probably 200 miles away at the time. The argument was that he was a "causa sine qua non"- though even this might not be true. Had he not signed the papers someone else probably would have. Was not the argument that a faulty diagnosis led to abuse and mistreatment by others, and the withholding of the appropriate expertise and care which ultimately led to improvement?

EDIT Lask, was the the name of the PRS man also involved in the case.

 

From MEPedia
https://me-pedia.org/wiki/Ean_Proctor

 

Transcript from Frontline documentary above featuring Ean

http://www.blogistan.co.uk/blog/articles/transcript_of_frontline_documentary_on_me_from_1993

 

The 1993 letter is here:
https://twitter.com/user/status/746682786833141760

 

Yes, I noticed this. Helping patients to mange symptoms is a long way from helping patients to reverse their illness by their own efforts as described in his CBT model of CFS.

Notwithstanding the inconsistencies in what he says, or implies, to different audiences, there does appear to have been a moderate shift in his stance over time. If that is so, it is unfortunate that he has never corrected any of his mistakes, or apologised.

My (imperfect) recollection is that he once responded on Twitter to criticism of something he wrote in the 1990s by emphasising that it was written 30 years, as though that meant it was no longer relevant. But what he was writing in the 1990s is still informing public policy. If he thinks that anything he wrote in the past is wrong he has a responsibility to correct the record.

I’m not holding my breath but, speaking only for myself, I will try very hard to forgive him if he ever apologises sincerely for all his mistakes.

 

I just can't see how he can "help patients to manage symptoms" as he has not training in managing a severe disability. Can't see how he could help one manage post exertional symptoms or repeated infections or not being able to stand up.

GP's don't help me with these problems as they don't understand or in some cases don't accept. A ENT Consultants helped me with sinus infections but what would be the chance an ordinary Psychiatrist would be able to do much for the physical symptoms of ME?

Is SW referring to helping them manage their psychological symptoms and if so, does that mean he is only of use to a particular subgroup who need a psychiatrist with his particular views?

What is this ME symptom advice he would he be able to give I wonder and why hasn't he shared this?

 

https://twitter.com/user/status/1217807342768660480

 

And presumably he would still believe or at least claim that PACE is "a thing of beauty."

 

Wessely appears to be implying that placebos are an acceptable treatment for "subjective" conditions.

 

Is it though? The counter argument is that it is not what patients transiently report on a subjective 'symptom' questionnaire (or report to a medical practitioner at a consultation) that is important, but the real-world impact on their actual day to day lives.

The key point is that symptom reporting is easily biased, whereas an individuals behaviour will quickly be restricted if they try to go beyond what their body can handle in the long term.

From Simon Wessely's perspective, there is a subset of patients who do not live up to the capability of their bodies and hence they need to be challenged behaviourally or cognitively to reassess the impact of their symptoms on their level of functioning. A placebo also provides such a challenge. The fact that objective outcome measures such as actigraphy or neuropsychological testing do not show benefit as a result of CBT, or that questionnaire reporting differences disappear at long term followups suggest that this perspective is probably incorrect.

 

What would he say about cases, not uncommon, where fatigue goes away but severe dysfunction still remains? I spent months without fatigue some years back but everything else was the same. Fatigue is not the core symptom, its just the low hanging fruit, easy to label people with. Because they do not use molecular markers of fatigue, some of which do exist, they can label something fatigue without sound evidence.

 

But what if reduction of pain leads to an increase in exercise, and an increase in exercise leads to exacerbation of the underlying condition? Presumably pain serves provides some evolutionary advantage, or it would have failed to survive the last few hundred million years. I realise that the BPS types will now jump up and say that this proves that the condition is nothing but avoidance behaviour fuelled by fear.

edit. Typo