Simon Wessley replies

[Bob]

Theirs is not an approach that says 'psychosocial' factors are causing ME for example and neither is Wessely for what that's worth.

Firestormm, I don't understand how you have come to that conclusion. Because, that is exactly what Wessely believes. In his reply to Mar, he states that a patient's beliefs 'perpetuate' the illness (i.e. a patient's belief system perpetuates their 'disability'). What this means, in his model of illness, is that CFS/ME is firstly triggered by an event. (I think, in his model, the trigger event can be viral, but it can also be emotional or stress related etc.) Then he says, some people recover normally from the initial stress-event, but others go on to suffer from CFS/ME in the long term. This, he hypothesises, is due to their belief system (e.g. they develop a fear of exercise, or a belief that they have an incurable organic illness, etc.) So, although he uses the word 'perpetuates', what he actually means is that if you address the faulty belief system, then the illness can be resolved. So, in this case, the word 'perpetuates' is interchangable with 'causes'. It's just that the word 'causes' goes down very badly within the CFS/ME patient community, so he doesn't use it.

This model of illness, that I've described here, is what is outlined in his CFS review paper (not the really weird one, but the slightly more coherent one), which I've mentioned before. From everything I've read, the review paper seems to describe his favoured model of illness.

 

[Firestormm]

Bob. The word 'perpetuate' is used in other papers in other conditions like the one about MS I quoted from previously. There are things that perpetuate any disability and any illness. One of those 'might' be unhelpful illness beliefs or ways in which we try and cope that are not perhaps the best ways.

If Wessely believes exclusively that these unhelpful beliefs are responsible solely for my continuing disability - and I don't think he does but am prepared if he does say it - then I disagree as do my doctors and those others engaged with the ME Service in Cornwall. But I cannot say that everyone with any disability is not going to find CBT unhelpful - can I? - because some can and do.

The extent to which things that can be helped by CBT affect each and every one of us can and must vary. To say that any one 'thing' like 'illness beliefs' are solely responsible for ME is plainly crazy - the results from PACE run counter to this argument for Christ's sake.

This is what I have been trying to understand - because I don't think he is saying that. His hand of cards analogy - this is the hand I have i.e. ME and one of the things that might help me live with it is to learn how to live with it more effectively.

Even if I am wrong - and Wessely responds to Mar with what you are claiming - then his opinion will not affect me or my engagement with the ME Service. I don't think I am wrong. I think the papers and the language do make for harsh reading, and a better attempt needs to be made by e.g. Wessely in order to explain more responsibly/carefully/sympathetically what he does mean.

He advanced a 'model' a hypothesis; that the way in which we (and others) deal with our incapacity is not always helpful to our ability to live with it and that our quality of life is adversely affected and can be improved.

I'm afraid I am not going to reply to any more on this thread, Bob. I've had enough now. If a response does come from Wessely, it will come. If it helps, it helps. If not, then it's his opinion and it isn't going to change anything.

Mar has a motion for debate over PACE tabled for next year sometime in the Lords as you know. I hope it yields something fruitful - I hope it is seen and used as an invitation to those behind PACE to engage and to explain. And I hope you get the opportunity to have your findings reviewed productively.

Have a good Xmas

 

[Bob]

Bob. The word 'perpetuate' is used in other papers in other conditions like the one about MS I quoted from previously. There are things that perpetuate any disability and any illness. One of those 'might' be unhelpful illness beliefs or ways in which we try and cope that are not perhaps the best ways.

If Wessely believes exclusively that these unhelpful beliefs are responsible solely for my continuing disability - and I don't think he does but am prepared if he does say it - then I disagree as do my doctors and those others engaged with the ME Service in Cornwall. But I cannot say that everyone with any disability is not going to find CBT unhelpful - can I? - because some can and do.

The extent to which things that can be helped by CBT affect each and every one of us can and must vary. To say that any one 'thing' like 'illness beliefs' are solely responsible for ME is plainly crazy - the results from PACE run counter to this argument for Christ's sake.

This is what I have been trying to understand - because I don't think he is saying that. His hand of cards analogy - this is the hand I have i.e. ME and one of the things that might help me live with it is to learn how to live with it more effectively.

Even if I am wrong - and Wessely responds to Mar with what you are claiming - then his opinion will not affect me or my engagement with the ME Service. I don't think I am wrong. I think the papers and the language do make for harsh reading, and a better attempt needs to be made by e.g. Wessely in order to explain more responsibly/carefully/sympathetically what he does mean.

He advanced a 'model' a hypothesis; that the way in which we (and others) deal with our incapacity is not always helpful to our ability to live with it and that our quality of life is adversely affected and can be improved.

I'm afraid I am not going to reply to any more on this thread, Bob. I've had enough now. If a response does come from Wessely, it will come. If it helps, it helps. If not, then it's his opinion and it isn't going to change anything.

Mar has a motion for debate over PACE tabled for next year sometime in the Lords as you know. I hope it yields something fruitful - I hope it is seen and used as an invitation to those behind PACE to engage and to explain. And I hope you get the opportunity to have your findings reviewed productively.

Have a good Xmas

Wessely did not properly explain his position to Mar. He avoided fully explaining the model of illness that he subscribes to, which is why I referred to his review paper, which uses exactly the same wording as he used in his reply to Mar. The review paper goes on to explain the full hypothetical model of illness. If Wessely does not subscribe to this model, then he is free to fully explain his position, which he totally fails to do in his reply to Mar.

So I agree with you that he needs to fully explain his position, with clarity, and without ambiguity.

Firestormm, maybe you could consider this theoretical situation: If Wessely & colleagues were to gain influence over your local services, and your local NHS suddenly changed the model of CBT that they use, and told you that it is curative, based on a model of illness such that symptoms and disability are perpetuated by false illness beliefs, then would this be a good situation for you?

So, these issues, re Wessely and his colleagues, are very important.
In my opinion, it's important that we get them clarified, shine a light on them, insist on transparency, and, also rebut them, and expose them for what they are.

My understanding is that Wessely's colleagues, have a lot of influence over the NHS services in the South East, and I think many doctors in the south-east subscribe to the psycho-social model of illness. Mine certainly does, and other people I know locally have the same problem.
So, for me, it's not about Wessely as an individual, but it is about the influence that the "Wessely School" (as the group of psychiatrists has been referred to by others) exerts over the overall approach to CFS/ME.

Heavily promoting a false hypothetical model of illness, does a lot of damage, for so many reasons, in so many different ways, over such a long time.

If they don't subscribe to this model of illness, then they can say so, clearly.

 

[Valentijn]

If Wessely believes exclusively that these unhelpful beliefs are responsible solely for my continuing disability - and I don't think he does but am prepared if he does say it - then I disagree as do my doctors and those others engaged with the ME Service in Cornwall. But I cannot say that everyone with any disability is not going to find CBT unhelpful - can I? - because some can and do.

The extent to which things that can be helped by CBT affect each and every one of us can and must vary. To say that any one 'thing' like 'illness beliefs' are solely responsible for ME is plainly crazy - the results from PACE run counter to this argument for Christ's sake.

This is what I have been trying to understand - because I don't think he is saying that. His hand of cards analogy - this is the hand I have i.e. ME and one of the things that might help me live with it is to learn how to live with it more effectively.

Page 18, National Archives NB 141-1. A private letter from Simon Wessely to Dr Mansel Aylward of the Department of Social Security:

[...] The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.

It [neurological categorization] 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 effective treatment, and a poor prognosis. It will discourage any sensible efforts 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!

I believe the Department is making an error if it accepts the partisan views put forward by pressure groups as a basis for making medical decisions. I also believe that it is a decision that the Department will come to regret, since it seems likely the result will be an ever increasing stream of claims for permanent benefits in people who might otherwise have had a chance of recovery.

If strength of belief is the ONLY determinant of outcome, then there is no physical factor, beyond what results from false beliefs.

Again, I'm happy to send a copy of the archive file that contains this document to anyone that wants it. Or I can post parts of it here or try to get it on my server for public viewing if desired.

 

[asleep]

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.

In addition to the myriad other issues with Wessely School ruminations, it should be noted that this view fails utterly to account for differing sources of and evidence for these individuals' "belief in a solely physical cause."

Imagine that we are instead talking about people who have fallen on their arm and are now reporting pain. As it turns out, a school of psychiatrists emerges with claims that ongoing pain is "perpetuated" by "beliefs" in structural damage (i.e. broken bones). Nevermind that these "beliefs" are generally rooted in qualitatively different experiences of pain and even x-ray evidence of structural damage (assuming we are talking about a point in time where such technology and medical understanding exists). After all, these psychiatrists point out, those patients who do not harbor "strong" "beliefs" in structural causes and who embrace their suggested treatment regime (increasing mobility and use of the effected arm to increase blood flow as well as positive thinking) generally see resolution of the pain in days, as opposed to months or years. These psychiatrists proclaim: "the only determinant of outcome in this condition is strength of belief in [structural damage]."

Or imagine instead these psychiatrists have beset a group of patients who, after an acute flu-like illness, go on to develop numerous rare and frequently fatal diseases due to chronically decimated CD4 counts. With great gravitas, these psychiatrists report that, while lowered CD4 counts typically accompany acute flu-like illness, the one factor that seems to accurately determine outcome is whether the patient "believes" he/she has an chronic, intractable infection. (It need not be mentioned that these "beliefs" are almost always formed well after the point that those who normally recover would have recovered. Nor need it be mentioned that these beliefs are often informed by supporting evidence, including--assuming a sufficiently advanced state of medical knowledge--tests indicating HIV infection). As further "evidence" that these "strong beliefs" are perpetuating the illness, the psychiatrists report that a preponderance of sufferers are also homosexual, indicating (to these psychiatrists) a susceptibility to "deviant" "beliefs." Once again these psychiatrists proclaim: "the only determinant of outcome in this condition is strength of [deviant] belief in [chronic infection]."

The point, in case it's lost in the scenarios, is that the Wessely School treats "beliefs" as inherently equivalent to irrational, unsubstantiated, deviant whimsy. There is no consideration given to the possibility (rather, near certainty) that these "beliefs" generally form as a result of evidence for underlying pathology that is ignored by them (something like saying "If I ignore all of your evidence, your case isn't very strong!") or experience of physiological pathology currently beyond the reach of medical knowledge.

The crucial differences between these hypotheticals and the current Wessely School program are 1) contemporary medical ignorance supported by misguided investigation and 2) prevailing misrepresentation and social stigma that undermine the seriousness of ME/CFS. Both of these factors are in turn exacerbated by the Wessely School monopoly, creating a self-reinforcing cycle of (money-saving, culpability-free) nonsense.

 

[alex3619]

The beliefs and hypotheses perpetuated by Wessely and others about dysfunctional beliefs in ME and CFS have a large number of serious issues attached.

For a start they rely on a complex interplay of logical fallacies, not the least of which is the psychogenic fallacy. Hence they are irrational and unscientific.

Then there is the issue of the unproven and untestable hypotheses and models. This is nonscience. If they were treated, discussed, promoted and used as unproven medical experimental hypotheses, and treated by all parties as such, then they would have some validity to claim they are doing science. The way I see actual treatment of the model is something else. This is sold quite often in political contexts/frames/worldviews. This is dangerous. Its not meeting minimal standards of scientific practice. Its potentially medically unethical, though ethics are tricky things. Its definitely not science as generally practiced.

There is very strong evidence that antivirals substantially benefit specific subsets of patients. This is ignored. This is not evidence based medicine. Its Evidence Denial Medicine, EDM. Similar issues arise out of exercise physiology, vascular physiology and neurological findings at autopsy.

Somehow, through all this, nobody is dicussing evidence that suggests ME is blood transmissable, and that the risk of contracting ME is higher after blood transfusion. This evidence is only suggestive, but its being ignored.

The failure to engage with serious, rational, detailed criticism of the PACE papers is something else again. It shows systemic bias in the response. Its not normal science.

Bye, Alex

 

[biophile]

 

[Sean]

Well, the PACE Trial was quite powerful evidence, so I'm not convinced that he changes his views according to the latest evidence, esp considering the objectively-measured outcomes in the PACE Trial, and the outcomes of the FINE Trial.

Not to mention Nunez (2011), which is about as comparable a study to PACE as anything we have, and which gave results most unflattering to the CBT/GET model.

Ever heard a peep from Wessely, et al, about that one?

Me neither.

 

[In Vitro Infidelium]

I think it would be overly-confrontational, and possibly against forum rules, to trawl through past posts, and quote examples.

So I made a general observation, based on my perception of some comments and discussions.

Really ? So unsupported claims and innuendo are preferable to ‘confrontation’ – sounds like a lack of courage of conviction on your part, to me. Tell you what, use my posts as the basis for your examination of this offence of ‘blaming patients’ – I won’t feel ‘confronted’ if you come up with some ‘transgression’ you think I’m guilty of , I won’t ask the mods to intervene and I’ll respond in an entirely civil fashion to any criticism you have of what I’ve written. And if you are not prepaed to do that – apologise for inferring any poster here has ‘blamed patients’.

Judging by the number of 'likes' that my comment has received, I'm not the only person who has perceived some posts and discussions in this way.

Seriously – invoking argumentum ad populum as a defence of an entirely spurious claim against unnamed posters ?

IVI

 

[In Vitro Infidelium]

There is a lot going in parliament - All party group Lords/Commons - now do you think my local MP bogged down with immigration problems UK has even the time. Back those already involved with ME and it's dire history our best way.

Establishing a relationship with an MP’s office – not just the MP can be an important support to other activity in Parliament. Of course it depends on the MP, but the better ones do invest in researchers and support staff, and many will be surprisingly supportive f a Constituents concerns, so long as the contact is maintained in an appropriate way – polite, request not demand, acknowledging limitations etc. Parliament works very much on a ‘critical mass’ principle – change happens when enough politicians are concerned with a particular thing – even if the concern is a side issue to an individual MP’s particular obsessions.

It’s important to remember as well, that under the geographic constituency set up, support from non constituents doesn’t have any material effect so the only direct way to develop Parliamentary ‘concern’ for M.E/CFS is via one’s own MP.

I'm sure most MPs have come across ME but I would be very suprised if they take much notice or follow what is happening. Remember many people come to MPs for help and write over many issues. Getting past the platitudes is difficult.

There are no guarantees of course, but communication from constituents is the only direct route to influence an MP. As I replied to Enid above – the MP is best seen as a collective of individuals, so getting the whole staff – Parliamentary Assistant, Local Office Manager, Researcher etc in an appreciation of the issue can be very useful in terms of ongoing response.

I was thinking that just having someone ask questions matters. When I was a civil servant many years ago I got the impression that trying to be accurate mattered when a question crossed my area of work. Making officials notice and think a question may be asked might make them more careful. I think there is some interesting psychology in this area but its not comming to mind at the moment.

You are quite right of course – the limitation though is on what the ‘corporate’ attitude is to the questioner. Even if the researcher at the coal face is diligent , if the general attitude from the political masters through to the Civil Service chain, is “no need to take seriously, just go through the motions’, then the process is poisoned at the outset. Questioners of Governments need clout, kudos or friendly reception to ensure their questions have impact.

I think scandal is too strong a word for what I intended to say. Its about those in power being seen to have ignored something or being out of touch with the world. I don't think a strategy of blame is useful but a strategy of offering good rewarding positive options often works.
Rituximab possibly ampligen. I'm not convinced about antivirals.

We could ask our MPs to fund a Rituximab trial. I think there are also issues of diagnosis, care and how people are treated. How about ensuring the equality act includes people with chronic illness.
How about some basic training for GPs.

This comes down to what politicians can or will, do. One has to be careful to place this discussion in specific contexts because different Countries/Regions have differing systems which provide for differing levels of latitude and influence for individual politicians, Parties and Governments. In the UK, issues of research are almost entirely dealt with at arms length – so no MP ever gets involved in directly making a decision on a particular type of research. I do agree however that it would be valuable for all UK patients to articulate the generality of problems of M.E/CFS to their own MP, highlighting the fact that without research 250,000 people are ‘stuck’.

I'm don't think letter writing to MPs really works unless its done on mass and written by individuals. There are so many different campaigns looking for attention. We need a way of capturing peoples, the media and MPs imaginations.

It’s important to distinguish between the process of establishing a relationship between constituent and MP, and the exercise of a campaign. The former need be no more than ensuring the MP’s office opens ‘ file’ – a polite simple letter setting out ‘say a request for the MP to support increased spending on medical research and specifying the specific problems experienced with local health services in respect of the lack of support. The latter of course does require co-ordination, but having an open ‘constituent file’ can facilitate increased attention to follow up communications that can be sent in response to a co-ordinated action.

IVI

 

[natasa778]

There is very strong evidence that antivirals substantially benefit specific subsets of patients. This is ignored. This is not evidence based medicine. Its Evidence Denial Medicine, EDM. Similar issues arise out of exercise physiology, vascular physiology and neurological findings at autopsy.
Bye, Alex

 

[Kati]

I agree with IVI about the importance to connect with their MP's. it can be invaluable.

 

[David Egan]

I heard horace reid is a psychiatrist. I don't know if he is for ME/CFS or against it ?

 

[ukxmrv]

There is a Horace Reid who is an ex-Nurse who has ME. He lives in Belfast I think.

 

[David Egan]

I met a horace reid who was a psychiatrist

 

[taniaaust1]

The PACE Trial demonstrated that self-reported (subjective) symptoms can be moderately improved, and 11% to 15% of CFS patients reached the minimal threshold of a 'clinically useful' outcome, after treatment with CBT or GET.

However, when it comes to objectively-measured physical disability, CBT had no therapeutic effect at all in the PACE Trial.

What i think is needed is some antiviral and other trials done and then pit their results against that improvement from 11% to 15% from the PACE trial (im sure an antiviral trial probably would bring at least a similar small improvement or may even do better). It would be a good way to bring attention the the poorness of the pace trial too.

 

[biophile]

To properly compare to the PACE Trial, the hypothetical antiviral trial must be nonblinded, the antiviral group must be given more optimism and encouragement about improvements than the other groups, the threshold for improvement must be literally only two minimal increments on the scale of the questionnaires, one of the criteria for "recovery" must overlap with "disabling fatigue" (while the others do not necessarily indicate recovery either), and all objective measurements must be excluded from consideration. Oh, and let us not forget, all criticism of such a trial should be dismissed as extremism and hatred, while FOI requests for trial data (which the authors promised to publish when they received funding but have failed to do so 3 years after the trial has ended) will be framed as harassment and a hindrance to the scientific process.

 

[heapsreal]

What i think is needed is some antiviral and other trials done and then pit their results against that improvement from 11% to 15% from the PACE trial (im sure an antiviral trial probably would bring at least a similar small improvement or may even do better). It would be a good way to bring attention the the poorness of the pace trial too.

I think the past valcyte studies done by montoya would show better improvement then the pace trial. And those first valcyte studies were done on people with cfs where onset occurred with flu like symptoms. I think if they did the proper testing( proper sub grouping) to put people in the valcyte study that there rsults woul;d be even better eg low nk function and high viral titres for herpes viruses and also use the 2 day treadmill test.

 

[alex3619]

I think the past valcyte studies done by montoya would show better improvement then the pace trial. And those first valcyte studies were done on people with cfs where onset occurred with flu like symptoms. I think if they did the proper testing( proper sub grouping) to put people in the valcyte study that there rsults woul;d be even better eg low nk function and high viral titres for herpes viruses and also use the 2 day treadmill test.

heapsreal, I agree. I think that Lerner for example has results an order of magnitude better than PACE. More patients respond, and the response is much greater, which combine to make the size of the response an entire order of magnitude better.

 

[heapsreal]

heapsreal, I agree. I think that Lerner for example has results an order of magnitude better than PACE. More patients respond, and the response is much greater, which combine to make the size of the response an entire order of magnitude better.

Lerner definately, but isnt his work classed as a collection of his treatment in his medical practice more then research, or so i think others have said. I wish someone would give him a big grant to do a proper research study on his work. I suppose his current would help someone else to pick up the ball and run with it. Lerner seems to be the forgotten guru, seems to be lower on the list when cfs gurus are mentioned, i think he should be alot higher up the order as he is one of the more experienced doctors when it comes to prescribing antivirals and treating herpes sub groups as well as bacterial co-infections.