Professor Simon Wessely says he is misunderstood

[Holmsey]

​

I've based all of my observations on the available evidence.
They didn't provide individual results for the 6 minute walking distance test, except to say that about a third of participants did not complete the six minute walking distance test.
But unless some participants deteriorated drastically (i.e. the therapies are unsafe), then not many participants could have improved, based on the zero-to-very-meagre average improvements.

So you agree, you just don't know.

 

[Holmsey]

Here's your evidence:

I've read the MEA results, in fact I took part, yes, there are people surveyed who say they got worse with CBT but there's no qualification of why or as a result of what advice, because that's all CBT is, advice.
So, I would counter with this, we argue down the notion that ME/CFS is psycological because there's no evidence for that, the Psyc's would quote back papers and we'd say but they're all subjective measures and you're coaching people to beleive they're better.
The MEA survey's are no more evidence than any of those papers, when trying to be honest you realise you can't have it both ways.

I think the outlandish claims are the ones in the CBT and GET manuals which claim that CFS is 'reversible' after treatment with CBT, and that CFS is based on 'fear' and 'avoidance' of exercise. These claims were proven to be wrong.

In your opinion, there are others who hold the opinion that they were proved right, that's why it's still being debated. if it's any consolation, I'm not avoiding exersize and I'm no longer scared of crashing, I don't like it but I've nothing to suggest I won't come out the other side as long as I stop everything and give myself that chance. So, MO is also that they have it wrong, and at every opportunity I'll engage with them in the hope I can convince them they have it wrong where I'm concerned.

GET is not much different to CBT. CBT encourages more exercise, whereas GET systematically plans more exercise. So, if they both ignore the fundamental nature of CFS/ME, and are based on an incorrect model of illness (as has now been proved by PACE), then they are inappropriate, and therefore subject to risk.

Then I'd have to conclude that there's no such thing as standard CBT and that we need a seperate name for PACE associated CBT. I took thirteen sessions and never once was I given instruction to exersize, rather I was told how to listen to my body, to spot the signs of trouble and begin dealing with them.

But if you want to go into semantics then CBT is still just advice on taking exersize, I'm still at a loss as to see how advice leads to actual damage, surely the advice being taken would constitute GET or just E, and that's not CBT.

Bikers joke, it's not speed that kills but it's sudden absence.

 

[user9876]

I think the outlandish claims are the ones in the CBT and GET manuals which claim that CFS is 'reversible' after treatment with CBT, and that CFS is based on 'fear' and 'avoidance' of exercise. These claims were proven to be wrong.

I think it is inacurate to talk just about CBT. As you say the PACE trial had a particular CBT protocol which they believed would cure CBT. I believe this was by pushing people to do more and hence the adverse reactions. Maybe we should give it a special name.

This would be very different from CBT that is purely aimed at helping people cope with symptoms and long term illness.

It is a real problem that these different things get lumped together and there are confused and inaccurate conclusions drawn within the scientific literature and in places like the NICE guidelines. I would even challenge the validity of a meta analysis unless the protocols are the same - however, I don't think the reviews go into such detail.

 

[Holmsey]

Holmsey if you can show me any evidence where Wessley has shown any interest at all in abnormalities such that blood tests provided - please do, until then I will say no he isn't interested, only in his own field of work and if that can be construed as a deliberate conspiracy so be it.

I'm not about to review his work, but you could always ask him.

I do recall that just recently documents were released and discussed on this forum, if I recall correctly one letter rather startled everyone as it was by Wessley and defened the seriousness of our condition with respect to benefits requirements. I'm sure that all of his knowledge including the evidence he'd seen of biological abnormalities formed that opinion, and shaped that advice.
He's a Psyc, he's going to do psyc research in the main, when you can show he's found biomedical evidence and then hidden it rather than just not following it up then I'll be impressed until then I don't see the conspiracy, sorry.

 

[Holmsey]

If he is going to make such extravagant and prejudicial claims about the effectiveness of his approach, then he is going to have to provide some pretty serious evidence.

For a start, he must allow an independent evaluation of that claim about his own clinic.

Bet he won't.

"What this study doesn't show is how much better these treatments are to say having no treatment at all"

Paraphrased but close, comments apparently made by Peter White following PACE during an interview.
Your comments are made on a quote which without the full text is difficult to place in context but perhaps the vast majority if not all would have got better or much better without CBT. That's what's missing from the text, it's assumed that Wessely is attributing that success to CBT due to the preceeding question but it's not explicitly clear. In either case PACE shows us that total success does not equal success of the treatment, some will get better despite it.

One thing is for sure though, if you're going to get better then I doubt it'll hurt to do it along with CBT, after all as the advert used to say. 'It's nice to talk'.

 

[Bob]

I think it is inacurate to talk just about CBT. As you say the PACE trial had a particular CBT protocol which they believed would cure CBT. I believe this was by pushing people to do more and hence the adverse reactions. Maybe we should give it a special name.

This would be very different from CBT that is purely aimed at helping people cope with symptoms and long term illness.

It is a real problem that these different things get lumped together and there are confused and inaccurate conclusions drawn within the scientific literature and in places like the NICE guidelines. I would even challenge the validity of a meta analysis unless the protocols are the same - however, I don't think the reviews go into such detail.

I agree... If we do discuss 'CBT', then I think we should be sure what the nature of the therapy is, and what model of illness it is based on, and what it's aims are.

I'm not certain what model of illness NHS-based CBT is supposed to be based upon.

 

[Bob]

I've based all of my observations on the available evidence.
They didn't provide individual results for the 6 minute walking distance test, except to say that about a third of participants did not complete the six minute walking distance test.
But unless some participants deteriorated drastically (i.e. the therapies are unsafe), then not many participants could have improved, based on the zero-to-very-meagre average improvements.

So you agree, you just don't know.

The therapies were not found to be useful, using objective measures.
There is no other evidence.

 

[Bob]

I've read the MEA results, in fact I took part, yes, there are people surveyed who say they got worse with CBT but there's no qualification of why or as a result of what advice, because that's all CBT is, advice.

Indeed. You are saying that anecdotal evidence is not so helpful. Which is why the PACE Trial is important.

Contrary to the authors' claims, PACE has not provided the evidence to tell us that CBT and GET are 'safe', because they have not published the deterioration rates.

...because that's all CBT is, advice.

Advice to exercise more?

Considering the nature of ME, that's why it's potentially dangerous.

The MEA survey's are no more evidence than any of those papers, when trying to be honest you realise you can't have it both ways.

I don't know what you mean. I'm not trying to have it both ways.
The patient organisation surveys suggest that CBT and GET can be harmful.
And, contrary to the authors' claims, PACE has not provided the evidence to tell us that CBT and GET are 'safe', because they have not published the deterioration rates.

... there are others who hold the opinion that they were proved right, that's why it's still being debated.

Only when they are misrepresenting the results of PACE, by saying that 30% recovered, or 60% improved, or that the therapies were 'effective'. None of which is true.

There's no data published on 'recovery', only an average of 13% improved, and the therapies were found to be 'moderately effective', using subjective measures only.

Then I'd have to conclude that there's no such thing as standard CBT and that we need a seperate name for PACE associated CBT. I took thirteen sessions and never once was I given instruction to exersize, rather I was told how to listen to my body, to spot the signs of trouble and begin dealing with them.

That's sounds far preferable, and acceptable. It seems it would be helpful for us all to specify exactly what we mean when we refer to 'CBT'.

I've always been referring to the type of CBT investigated in the PACE Trial.
I admit that I'm not certain about the nature of NHS-provided CBT.

But if you want to go into semantics then CBT is still just advice on taking exersize, I'm still at a loss as to see how advice leads to actual damage, surely the advice being taken would constitute GET or just E, and that's not CBT.

The aim of CBT in the PACE Trial was to encourage patients to exercise more. It assumed that they were avoiding exercise because of a 'fear' of exercise.

Any advice that ignores the nature of an illness has the potential to damage patients.

 

[alex3619]

During my last crash, which was also one of the worst I've had by GP pressed me to go through the events which led to it, the cascade covered months, starting with a new infexible manager at work, being pushed back through the occupational health assessment, letters to my GP, letters to my specialist. Prior to this re-assessment I was working from home for part of my week, during it I was required to be in office all week. Next up were the respiritory infections I couldn't seem to clear and eventually the crash. My GP concluded that I'd effectively been managed into a crash and had no hesitation as a first step to just get me out of work, in doing so he told me I was the third person that morning who he'd effectively signed off through work related stress issues. Three, and my appointment was mid morning.

I work for a top health insurace provider and we have posters all over the building reminding us of that same statistic, so doubt it if you will, choose to beleive that they're not really suffering a mental health issue. But when my employer, who stands to loose as we cover absence under any circumstance, beleives it, then I'm prepared to as well.

This is arguing from a specific instance to a generalization. I do not doubt that there are people with serious anxieties, phobias or major depression. I do however doubt the extent to which this is really a mental issue or just conveniently claimed to be a mental issue.

In the new DSM-V for example, despite a reported claim that over 50 professional organizations have asked them to submit the evidence for some of the changes to an independent review, they not only refuse but still have not released the "evidence". This is medicine by executive fiat, as so much of psychiatry has been. I see a lot of psychopsychiatry as more of a cult than a science. especially psychosomatic medicine.

I doubt you were properly investigated for physical causes. Did anyone measure your BH4 for example? And that is only one test they should have run. Stress is a convenient scapegoat. Its about as useful as a diagnosis of fatigue. Stress has a physiological basis, but that is conveniently ignored .... the too hard basket. I put it to you that the simple hypothesis and most probable is that stress is just a buzzword to avoid proper investigation. Once upon a time it was demonic possession, witches curses or the devil himself. Evil spirits used to be released by drilling holes in people's skulls. Now we have somatization disorder, stress disorders and so on, none of which are understood or proved. Its the physiology that drives things, not the magic of stress or the mind. Our thoughts can influence the brain, but that influence has limits.

If you want evidence, start there: is any of their hypotheses proved? If so which ones? Biopsychiatry might be getting there, slowly, but psychopsychiatry seems to be entrenching itself deeper into dogma. Its not just me saying these things either. Read widely in psychology research journals. The issues are surfacing everywhere.

Bye, Alex

 

[In Vitro Infidelium]

Eh? What on earth do you mean by that?
I get the impression they're already throwing everything they've got at us, and it's not working. If anything, it's just increasing our resolve. I think we've got them rattled. Hijacking an organisation like the SMC to further their own narrow agenda actually smacks of desperation to me.
Your comment is truly bizarre. Seriously, what else can they do to us? It's not like we've got anything to lose.

It was precisely the notion of “It's not like we've got anything to lose” that I was thinking of. I also do not get what you mean by “Hijacking an organisation like the SMC” – the SMC was created precisely for the purpose of defending ‘scientists’ and while we may want to argue psychiatry isn’t science, that is clearly not how the trustees of the SMC, nor the SAS, see it. When we are talking ‘toe to toe’ – it’s not M.E/CFS advocacy against psychiatry, or even a minor school of psychiatry. The potential opposition would be a combination of all health professionals, and all scientists. At present what you describe as “throwing everything they've got at us” is merely directed at a notional ‘extremist wing’ and is being ‘thrown’ from a small focus of concerned professionals. Increase activities that could be interpreted as ‘harassment’ and you shift M.E/CFS advocacy towards a widespread acceptance of it being comparable to Animal Rights activism throughout the medical and research fields.

I’m not going to describe what a concerted campaign of ‘defence’ might look like, although it is not at all difficult to construct. What one has to consider is that at present there are M.E/CFS patient organisations maintaining good relations with all parts of the medical and research professions. The logic of those who want to pursue advocacy via conflict is: that all M.E/CFS patient organisation should engage in a fight with psychiatry. Under that circumstance, every other medical specialism would be encouraged to view all M.E/CFS advocacy as a source of potential harassment for all health professionals. The implications of that, not just for relationships between advocacy organisations and health professionals and researchers, but for the relationship between individual patients and health professionals, are considerable.

I understand that what I describe is not amenable to your perspective. What I believe you ought to acknowledge though, is that if my description has any possibility of being accurate, the those who argue for conflict driven advocacy are asking every M.E/CFS to take a significant risk of alienating the entire medical and research professions. My view is that taking such a risk is not just irresponsible it is grossly dishonest because we have no means to know who amongst us will be most seriously disadvantaged by such alienation. As I wrote previously ( to this effect anyway) – those who advocate conflict, are frequently the last ones to actually get involved or to be exposed to substantial cost.

IVI

 

[alex3619]

When a doctor routinely advises people to go for unnecessary and dangerous surgery, thats grounds for investigation, loss of licence or other other penalties, and legal action. So if a CBT therapist advises someone who should not be exercising vigorously to go exercise more, how is this any different? They should be investigated in every case in which there is harm.

I do agree that we have to be careful with terminology. I have no objection to CBT itself, its just a tool. I have had quite a few CBT sessions myself to improve coping skills ... although every single thing they told me I had already got from Buddhist literature. I have looked very wide for answers.

When talking about CBT/GET I am always referring to the use of CBT to treat CFS and ME that promotes increased activity even after there are increased warning signals (pain, fatigue) that its doing harm. I also like to talk of the Dysfunctional Belief Model. CBT is just a tool, its the DBM that is driving its misuse.

Exercise advice in CFS and ME should be coming from professional exercise physiologists who have done appropriate testing. Putting it in the hands of poorly qualified people in the field, who know almost nothing of ME or exercise physiology is dangerous. Telling them (therapist or patient) that there is no harm doing any of this is potentially dangerous advice, see the first paragraph.

Bye, Alex

 

[alex3619]

Really, IVI? All medicos, and all scientists? Really? If the system is broken something has to be done. If the professional medical organizations stand in the way of fixing it, they need to be dismantled or reorganized. Ditto for other organizations. When an organization meets its use by date and starts being dangerous to society, there are two choices in the long term. It can revamp itself and fix the issues, or it can be disbanded or forcibly reorganized. Generally this occurs by slow change, and in the process many people continue to be harmed.

The other choice is a scandal finally coming to light that initiates a formal enquiry with sweeping powers. Hmmmm, it seems one like that occurred in the UK just recently. From that enquiry will be recommendations, and from those (hopefully) changes will be made. It just takes one very public scandal. So my advice to people is (if a genuine travesty of medical treatment has occurred) scream loud, scream often, and one of those events may trigger the change needed.

Its the deafening silence from too many quarters that allows this to continue.

I don't know who you are speaking about when you say that the logic is "all M.E/CFS patient organisation should engage in a fight with psychiatry." Nobody is using that logic, except maybe you. First of all, this is not just an ME/CFS problem. Secondly, many within academia, psychiatry and medicine are already engaged trying to do something. Third, there is not a call for unity ... not by me anyway, though I have heard you say we need to be united. Unity on ME or CFS issues is a pipedream in current circumstances, either for cooperation with medical abusers or to fight it. That does not mean it should not be opposed.

Nothing that has been advanced so far in this thread or any other has even begun to sway me from the view that unscientific, irrational and dangerous psychiatric practices should be opposed. Nor is it likely to given the kinds of arguments so far raised. The issue, to me, is not whether or not it should be opposed. Its how it should be opposed.

One of the groups we should be engaging with is biopsychiatry. Biopsychiatry is largely in opposition to psychopsychiatry, and has in my view a far greater chance of finding answers in the long run in comparison to psychopsychiatry (and no I am not talking about answers for CFS and ME, just in general). We don't need vague untestable hypotheses or models, we need objective testable mechanisms.

Bye, Alex

 

[alex3619]

"This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy."

"But there is something that I must say to my people who stand on the warm threshold which leads into the palace of justice. In the process of gaining our rightful place we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred."

The "I have a dream speach".
Martin Luther King Jr.
http://www.huffingtonpost.com/2011/01/17/i-have-a-dream-speech-text_n_809993.html

 

[Holmsey]

The therapies were not found to be useful, using objective measures.
There is no other evidence.

If you can't see it I'm afraid I've run out of ways to try and show it.

 

[Holmsey]

This is arguing from a specific instance to a generalization. I do not doubt that there are people with serious anxieties, phobias or major depression. I do however doubt the extent to which this is really a mental issue or just conveniently claimed to be a mental issue.

And you jumped from talking about what i was talking about to bio v psyc, never mind.
In the original post were I included the papers upon which the 1 in 4 figure was gleened, I included the numbers for those ranging form a GP visit, considered to be psyc related to those institutionalized.
I then offered a personal anecdote which supports the 'type' of GP visit which is undoubtedly considered a 'psyc' visit, I then moved to a general example, the view clearly held by a leading US based heath care insurer and enabler.
I don't see that as arguing from the specific to the general, I see it as offering a specific example and a more general example which supports the original study based conclusions.

I can't however offer any comment on your opinion as to whether these really count as psyc 'events', clearly for me when I visited my GP I was in a physical state of exhaustion, not depression or phobia.

 

[Valentijn]

There are posters within this thread who have indicated CBT has helped them cope with their injurys, and I've yet to see evidence that CBT, talking therapy, can worsen someone's condition unless they're so ill they can't talk or can't talk for long enough and the CBT therapist is so inadequate that they force them to do so....nah, that line of thought is just getting silly, I'll stick with I've not seen the evidence.

You seem to be implying that CBT and CBT-for-ME are the same thing. They are not. One is for coping with illness, and one is for curing ME patients by convincing them that they aren't ill. CBT-for-ME has the goal of encouraging ME patients to become more active.

 

[Valentijn]

I think it is inacurate to talk just about CBT. As you say the PACE trial had a particular CBT protocol which they believed would cure CBT. I believe this was by pushing people to do more and hence the adverse reactions. Maybe we should give it a special name.

This would be very different from CBT that is purely aimed at helping people cope with symptoms and long term illness.

It is a real problem that these different things get lumped together and there are confused and inaccurate conclusions drawn within the scientific literature and in places like the NICE guidelines. I would even challenge the validity of a meta analysis unless the protocols are the same - however, I don't think the reviews go into such detail.

I agree.

And I have to wonder - if drug companies can't use a name for their new drug that's similar to another drug's brand name, why on earth are the BPS morons allowed to call their torture regimen for ME patients "CBT", when it's completely opposite to real CBT?

 

[Jarod]

During my last crash, which was also one of the worst I've had by GP pressed me to go through the events which led to it, the cascade covered months, starting with a new infexible manager at work, being pushed back through the occupational health assessment, letters to my GP, letters to my specialist. Prior to this re-assessment I was working from home for part of my week, during it I was required to be in office all week. Next up were the respiritory infections I couldn't seem to clear and eventually the crash. My GP concluded that I'd effectively been managed into a crash and had no hesitation as a first step to just get me out of work, in doing so he told me I was the third person that morning who he'd effectively signed off through work related stress issues. Three, and my appointment was mid morning.

I work for a top health insurace provider and we have posters all over the building reminding us of that same statistic, so doubt it if you will, choose to beleive that they're not really suffering a mental health issue. But when my employer, who stands to loose as we cover absence under any circumstance, beleives it, then I'm prepared to as well.

You say, "I was the third person that morning who he'd effectively signed off through work related stress issues"

Was it a respiratory infection that kept you from working, or stress? What did the doctor put down in the notes as the cause for your illness?

There is a big difference and it is very important to clarify since you work for a major insurance company. Stress related disorder only qualifies for 2 years long term disability, because it is considered a mental illness. If an infection is considered to cause disability, insurance would pay for more than two years if one remains disabled.

 

[In Vitro Infidelium]

That's not what she was saying. She is saying that even when there is both ME and mental illness present, the psychiatric treatment of ME makes it very unpleasant or even dangerous to seek help for the mental illness. In Brian's case, it seems that there are both psychiatric problems and ME, yet ME is being treated like a purely psychiatric problem - this is quite inappropriate, and would be considered outrageous medical neglect in the case of any other illness. "Yes sir, your cancer is all in your mind. I can ignore those test results and the advice of your oncologists, because I'm in charge now. Now go take these drugs that would only hurt you if you actually had cancer."

What is your source of information regarding that one individual – the reality is you have no idea what the physical or mental health of the individual is. There is no equivalence with cancer because cancer has an established aetiology and widely accepted treatment regimes althugh any co-morbidity may present profound challenges – potentially anti psychosis medications could interfere with oncology treatments. Treatment of psychiatric illness may well conflict with what produces best results for M.E/CFS – the health care professionals have to make difficult judgements on a case by case basis, not abide by some simplistic tick box notion of how someone with M.E/CFS must be treated irrespective of any other illness they are afflicted with.

It seems like a very rare problem to worry about solving. Do MS organizations sit around and figure out how to be better taken care of if an MS patient gets hospitalized for mental illness?

You’ve just claimed it’s outrageous but now you don’t believe the care of people with physical and co-morbid mental ill health is an issue worthy of concern because it doesn’t affect enough people. How else is the inpatient care of people who have co-morbid physical illnesses whether M.E/CFS, M.S or anything else, when they are hospitalised through mental ill health, to be improved if M.E/CFS advocacy does not engage with the services delivering the care ?

Your argument is unreasonable – you don’t want people treated in the way you claim to have an example of – but you also demand there be no engagement with the people delivering the care. It is even more unreasonable when judged in the context of this thread where there has been claims about children with M.E/CFS in psychiatric inpatient care. There can only be very few such children in the UK because there simply is not a large number of inpatient places available – so we are to be concerned about a few children, but not the several hundred adults who statistically will suffer co-morbid M.E/CFS and serious mental illness each year in the UK.

I can't understand why you are so focused on the psychiatric (non-)aspect of ME, and so adamant that we make senseless concessions to psychiatrists that are not required from patients with other non-psychiatric disease.

Why would I be arguing for making ‘senseless concessions’ – clearly if concessions were at issue and I was arguing for them I wouldn’t consider them senseless. But I’m not in a conflict – I don’t see concessions having to be given by anyone and I’ve made no such argument. Further I’m not at all focussed on psychiatry – the only reason I’m involved in discussion about psychiatry is because others, are themselves adamant about the necessity of making anti psychiatry an integral part of M.E/CFS advocacy. In my view that is ill judged to the point of absurdity, and actually threatens to hijack M.E/CFS advocacy in a cause that is of no conceivable benefit to people affected by M.E/CFS.

IVI

 

[Jarod]

when trying to be honest you realise you can't have it both ways.

Agreed!