Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

[chrisb]

That personal story of Wessely tells us something about the man. He says that, as a junior psychiatrist, he started seeing patients with the condition in 1987. In 1988 he had a paper published saying it was "time for a new approach". Some might think that that might have been rather early in his career for such a pronouncement.

It is also interesting that he mentions the letter to Mansell Aylward in 1992. Pity he forgot about the one in 1993.

 

[Snowdrop]

I just got to wondering if it might be a good idea if threads were set up for each of the numbered points he makes and we can discuss those points with regard to their veracity, what is left out and not mentioned or any other points we might consider that would clarify how we think about each of the points made?

I'm not volunteering so understand if nobody is prepared to do this.

 

[Sean]

Wessely barged in on the field loudly saying everything that has been published about it is wrong and the patients are all wrong and only he knew better. Some of his early articles acknowledge the "common sense" knowledge of pacing and how it is critical to avoid pushing into exacerbation. He knew. He bullied his way through political influence.

I have been watching Wessely in action since the mid 1990s. He is utterly obsessed with his view of ME/CFS, and has never deviated from it one iota since his first public comments on it. He has suppressed, misrepresented, smeared, and dismissed every piece of evidence or argument against his view, and ruthlessly.

He is a genuine megalomaniac, who simply cannot believe he could possibly be wrong, nor admit it if he is, and has pulled off one of the greatest propaganda coups of modern times.

If I had not seen it unfold myself, and the consequences, I would have trouble believing it too. But here we are.

 

[Sean]

That personal story of Wessely tells us something about the man. He says that, as a junior psychiatrist, he started seeing patients with the condition in 1987. In 1988 he had a paper published saying it was "time for a new approach". Some might think that that might have been rather early in his career for such a pronouncement.

Check out his comments in the formal advice he gave to the court in the Ean Proctor case*. At the time he was barely 2 years qualified as a psychiatrist, yet was basically calling himself an expert on ME.

Wessely is certainly a world leader at something – sophistry, and sheer arrogance.

* Starting at bottom of page 12: https://www.margaretwilliams.me/2003/mental-health-movement-persecution-of-patients-select-ctte.pdf

 

[Mark Vink]

I think we may need to speak more in terms of deterioration than harm, because I suspect there may be ways to consider patients not being 'harmed', even if their condition deteriorates. Not sure, but I would not be surprised. I cannot help think that PACE might have done this.

If you deteriorate because of a treatment no matter which treatment it is, wouldn't you say that you have been harmed by that treatment? We all know GET is harmful but the psychiatrists will never admit to that

 

[mango]

If you deteriorate because of a treatment no matter which treatment it is, wouldn't you say that you have been harmed by that treatment? We all know GET is harmful but the psychiatrists will never admit to that

In Sweden there's a concept called "vårdskada" (literally "care harm"). Is there an equivalent in other countries?

The definition of "vårdskada" according to the patient safety law (Patientsäkerhetslagen 2010:659) is, roughly translated:

"suffering, bodily or mental harm or illness and death that could have been avoided if adequate measures had been taken during the patient's contact with the healthcare provider."

https://patientsakerhet.socialstyre...-lagar-och-foreskrifter/patientsakerhetslagen

Personally, I would most definitely say that GET has caused myself and lots and lots of other people "vårdskada" = harm.

 

[Jonathan Edwards]

If you deteriorate because of a treatment

How do we know there is a causal relation, @Mark Vink ? This is the difficult bit.

 

[Robert 1973]

Well for a start they did not lookout any randomised controlled trials because none of the trials were adequately controlled. And data on harms will only be robust if the gathering is robust, as you know. In general data on harms is not specifically gathered from RCTs. In fact it is often gathered initially from open phase 1 studies and then from open phase 4 post marketing studies.

Do trials of psychological/behavioural interventions have phases? Or do they just run any old sort of trial whenever they feel like it according to what they think is most likely to produce the desired results?

It has always seemed strange to me – and this overlaps with the point Jonathan was making – that BPSers, who mostly work in mental health, seem to ignore or dismiss the negative psychological effects of their treatments, as though they are irrelevant, unimportant, or the responsibility of the patient. And yet positive psychological effects are hailed as evidence of efficacy.

How do we know there is a causal relation, @Mark Vink ? This is the difficult bit.

I think that is the point @Barry was making. If a patient deteriorates following treatment it may or may not be harm. But if deterioration is recorded one may then be able to infer whether the treatment has caused deterioration and therefore harmed patients.

 

[Jonathan Edwards]

Do trials of psychological/behavioural interventions have phases? Or do they just run any old sort of trial whenever they feel like it according to what they think is most likely to produce the desired results?

No I don't think they have got as far as phases. The phase 1-4 nomenclature is a bit elastic but probably arose in industry in relation to development strategies aimed at licensing.

 

[Barry]

If you deteriorate because of a treatment no matter which treatment it is, wouldn't you say that you have been harmed by that treatment? We all know GET is harmful but the psychiatrists will never admit to that

Yes, I agree with that 100% - preaching to the converted . But my concern is (and I'm not a scientist so lack the where-with-all to know if I'm right or not) that when scientific papers are published, is there a loophole of some kind whereby 'harms' can be defined in such a way, so that there is a grey area where a significant number of those who deteriorate, do not get reported as being harmed? Like I say, I don't know, but suspect there could be a loophole that trials such as PACE exploit. Because we know that some on PACE deteriorated, and yet PACE reported there were no harms. So something is not right here, and it would be good to understand it better. But like I say, I agree with what you say completely, and did so long before you said it, but would like to be able to call to account those who do not agree ... e.g. BPS et al.

 

[Jonathan Edwards]

is there a loophole of some kind whereby 'harms' can be defined in such a way, so that there is a grey area where a significant number of those who deteriorate, do not get reported as being harmed

It is more of a meteorite crater than a loophole. Throughout the practice of trials negative scores have been ignored with impunity. Adverse events tend only to be recorded as such if they are something unexpected in the context, like bone marrow failure or gastric bleeding. Worsening of a condition is just usual. 'Flares' of symptoms are sometimes documented but much of the time worsening is lost from the data.

I was involved in an interesting situation as a preclinical advisor to a company making a drug for RA that inhibited an enzyme. I had devised the animal assays that showed the enzyme was blocked in vivo during my doctoral studies. But I was asked to comment on a form of tendon pathology that was turning up in marmosets being given the drug for toxicity studies. It seemed clear to me that if this occurred in patients it would produce symptoms pretty indistinguishable from their arthritis. So the side effect would be unlikely to be reported as significant maybe until major damage had occurred. The company thanked me for my views and discontinued my advisorship. The trial went ahead and the drug did not work for RA so I forgot about it.

 

[rvallee]

How do we know there is a causal relation, @Mark Vink ? This is the difficult bit.

I mean, there has to be a point at which you either have to declare thousands of people to be mentally incompetent and that the underlying similarities in their testimonies is just pure cosmic coincidence, or some sort of professional obligation has to kick in. Duty of care? Do no harm? What good are they if they can put aside on mere faith (or in our case, by deliberately preventing the possibility of lodging those adverse reactions)?

We don't know what that cause is but the statistical likelihood of tens of thousands of similar cases defies all reason, especially given their preferred model of the disease based on individual unhelpful beliefs. There is also precedent in other diseases that were considered psychosomatic before their mechanism was sufficiently understood.

And since they do not declare ME patients to be mentally incompetent, then whatever that causal relation is seems less important than the fact that it is similar and that it should be taken seriously. Not at face value but definitely a major part of research and guidelines.

Because the current status quo is either that we are all mentally incompetent to our own experience or that we are somehow lying in massive coordination. We cannot explain every bit of our experience in observing this effect but it's pretty consistent across surveys and testimonies. That should at least warrant caution, yet the status quo is categorical denial that it is even possible for deterioration to occur.

 

[Inara]

In his early writings Wessely stressed the importance of this very point, that legitimizing ME would send hundreds of thousands of undeserving patients onto medical services and disability benefits.

Do you maybe have the original quote at hand? (I could need it.)

 

[rvallee]

Do you maybe have the original quote at hand? (I could need it.)

I think there are other even more-to-the-point statements somewhere. I think it was in an address to an insurer, or an insurance industry forum, where he talked about how imperative it was to stop this disease from being legitimized because of the cost to their business.

But I saved this:

It is also a most unfortunate message to send sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning, for which there is little effect treatment, and a poor prognosis. It will discourage any sensible effort at rehabilitation. As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome. I cannot believe that is the intention of the Department, if only on grounds of cost!

It's quite amazing how that single paragraph contains so much fabrication, incompetence and malice rolled up all in one. Truly a textbook example of the Peter principle that he was skilled enough at politics to gain any influence. I really wonder how much more harm he will be found out to have committed.

In that letter he also managed to both denigrate serious mental health conditions while at the same time whining how legitimizing ME is denigrating to mental health and that's a bad thing.

The Trump is strong in this lot. They think so highly of themselves they are unable to ever see flaw in their thinking. If their thoughts conflict with the world, clearly it is the world that is wrong.

 

[BruceInOz]

In Sweden there's a concept called "vårdskada" (literally "care harm"). Is there an equivalent in other countries?

It sounds like the medical term iatrogenic harm i.e., harm caused by the medical treatment.

 

[Inara]

But I saved this

Thanks a lot @rvallee. If you or anyone else comes across a reference for that quote, I would be glad.

In his early writings Wessely stressed the importance of this very point, that legitimizing ME would send hundreds of thousands of undeserving patients onto medical services and disability benefits.

 

[Barry]

It is more of a meteorite crater than a loophole. Throughout the practice of trials negative scores have been ignored with impunity. Adverse events tend only to be recorded as such if they are something unexpected in the context, like bone marrow failure or gastric bleeding. Worsening of a condition is just usual. 'Flares' of symptoms are sometimes documented but much of the time worsening is lost from the data.

Which seems like a major source of bias, if a significant number of negative 'improvement' are clipped out of the results, whilst positive ones are not.

 

[rvallee]

Thanks a lot @rvallee. If you or anyone else comes across a reference for that quote, I would be glad.

Just want to clarify I was paraphrasing. Of course he said it in a diplomatic way that sounds benevolent and can be interpreted either way. But he has made his beliefs clear, as the quote I cited in my last comment is a good example of. His model is that disability is the result of one believing to be disabled. That follows that those patients should not be treated by medical professionals since they do not have a medical problem.

He didn't call ME patients undeserving, but he definitely believes that strongly enough to deny them all medical care and social support. I doubt there is a single piece of writing where he reveals his genuine thoughts, that would have been quite problematic for his career. Few misogynist researchers would call all women weak and hysterical and their complaints should never be taken at face value. They just find the language to say the same thing without the problems that come with saying the quiet part loud.

 

[rvallee]

Which seems like a major source of bias, if a significant number of negative 'improvement' are clipped out of the results, whilst positive ones are not.

Cherry-picking is definitely always very bad science. It's pretty fundamental, even. I remain amazed that this particular case is allowed to go on even though it has clearly been exposed as a textbook example and the reviewers and editors of the journals, as well as Cochrane, know this and are fine with it.

 

[chrisb]

Thanks a lot @rvallee. If you or anyone else comes across a reference for that quote, I would be glad.

My suspicion is that that quotation comes from Wessely's 1993 letter to Mansell Aylward, the one he forgot to mention in his potted autobiography.

EDIT I confirm that it is from the letter, apparently undated, marked as received 6-10-93 Simon Wessely to Mansel Aylward