Professor Simon Wessely says he is misunderstood

[maryb]

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.

 

[Bob]

Why not turn that on it's head, give them 250,000 patients and by their PACE claims they'd reduce that by a third in under a year, pretty hard to make it look like you've sent 83,000 people back to work or education when in fact they're still as ill as when you started.

It wouldn't tell us anything. A third of patients may improve substantially over time, naturally, without any medical intervention. The psychiatrists say that they see a third improve substantially in their practise, which they have mistakenly attributed to their preferred therapies. And the PACE Trial saw a large number of patients improving, to some degree, over time, without specialist treatment. But this tells us nothing about the therapies (CBT/GET), unless you have a control group against which to compare any improvement seen in patients. This is why the PACE Trial is such good evidence. Previously, the psychiatrists had assumed that their treatments were leading to the results that they saw in their practises. But they seem to have made the basic mistake of using anecdotal evidence in order to validate their preferred treatments. This was a mistake, as demonstrated by both the PACE and FINE Trials. The PACE Trial saw large numbers of patients improving, to some degree, over time, without specialist treatment, but only an extra 13% (11% to 15%) of patients improved as a result of CBT and GET, and this was only a minimal improvement, or more, using a questionable methodology. Objective measures used in the PACE Trial showed zero improvements as a result of CBT.

Although the PACE Trial used a questionable methodology, the evidence doesn't get better in terms of showing that CBT and GET are almost useless. On all objective measures, CBT was found to be useless, and GET was little better, leaving the average patient severely disabled.

Employment hours were not increased, and benefits claims were not reduced.
So CBT and GET were completely useless at objectively improving people's lives.
There was just a very modest improvement in the subjective primary measures, based on self-reported questionnaires, which the authors acknowledge are subject to subjective bias.
Considering that the PACE trial did not recruit patients using the NICE CFS criteria, or any other internationally recognised CFS or ME criteria, but recruited 'chronic fatigue' patients, the 13% response rate for CBT and GET is quite meaningless.

Some patients may well find CBT and GET useful, if nothing else is on offer to them.
But the PACE Trial demonstrated that CBT had zero effect in terms of improving physical disability, when measured objectively.
So, maybe, instead of mis-promoting CBT and GET as cures for CFS/ME, whilst at the same time suggesting that CFS/ME is a behavioural disorder, based on a fear of exercise, they should start looking at support systems that help support people during a time of crisis.

These could include social support, personal care support, specialised counselling, health crisis management, education and information about the illness, help for families, symptom management (i.e. pacing) support.

Not to mention pumping research funds into biomedical research, as an absolute priority.

I repeat, CBT had zero effect on improving physical disability, using the objective measure.
There was no improvement in employment hours or benefit claims.
And when using subjective measures, only 11% to 15% (average 13%) improved as a result of treatment with CBT or GET.

 

[Enid]

Why are we talking about CBT/GET still - useless locally - abhorrant led only by the psychosocialists. Fury at this tip of the tail trying to wag the dog. What did aid was my GP (worth her salt) could support in the light of her (as yet) lack of of understanding - and treat symptoms as they developed.

 

[Valentijn]

Lady Mar says I understand, that without Wessely and the 'psycho-social' approach people with ME would receive better treatment. My question is 'What treatment?'

There is a distinction that I think needs to be made and always borne in mind but that seldom is: the difference between clinical treatment and care - and scientific research.

Less mistreatment would be one huge difference - ME would not be passed off a symptom of psychological illness, which sometimes harms us as a result. Doctors could investigate and treat symptoms instead of following recommendations to avoid encouraging false illness beliefs by sending us to specialists and ordering tests.

Not to mention undermining our trust in ourselves, doctors, and/or psychologists.

I think less mistreatment does indeed equate to better treatment, even if no cure is on the table.

 

[Enid]

And why should we be the slightest interested in Simon Wessely and his problems - or is this some sort of personal Freudian psychoanalysis on his part. Dead duck Simon try more intelligent branches of medicine - neurology, virology, immunology - or will that tax the brain.

Whoops oh dear I kinda had a little rocky beginning but dare you believe it - very possible to grow out of - try harder. A rainbow ahead if you can and science. Don't collaspse in the street, pass out, GP's doubting, specialists unable to diagnose. Try it.

 

[Sean]

Q. How successful is your treatment of CFS?

A. Roughly a third of people completely recover and a third show good improvement. About a third we can't do much for.

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.

 

[natasa778]

Less mistreatment would be one huge difference - ME would not be passed off a symptom of psychological illness, which sometimes harms us as a result. Doctors could investigate and treat symptoms instead of following recommendations to avoid encouraging false illness beliefs by sending us to specialists and ordering tests.

Not to mention undermining our trust in ourselves, doctors, and/or psychologists.

I think less mistreatment does indeed equate to better treatment, even if no cure is on the table.

BULLSEYE !

 

[leela]

Professor Simon Wessely says he is misunderstood

Poor Little Bunny.

 

[natasa778]

Do one in four really have a mental health issue every year? Or is it that psychiatry is able to describe it that way based upon their hypotheses? ... Just because something is defined as psychiatric doesn't make it so. Psycho-psychiatry is very poor science, and psychosomatic psychiatry is based on multiple layers of logical fallacies.

Very true.

• around 300 people out of 1,000 will experience mental health problems every year in Britain
• 230 of these will visit a GP
• 102 of these will be diagnosed as having a mental health problem

I bet ya a cool 100 out of those 102 will be MISdiagnosed as having a mental health problem

 

[Wildcat]

natasa 778 wrote "I bet ya a cool 100 out of those 102 will be MISdiagnosed as having a mental health problem"

Yes indeed!

ME sufferers who live alone, bedbound and in need of homecare just to maintain nutrition, personal care/hygiene and who are thus at risk, are diagnosed with depression, are given antidepressants, but still don't get the life saving practical personal care they need!!!!!

.
The prevalence of handing out mental health diagnoses to women struggling to work and raise kids on a low income is shocking... etc etc

.

Women concerned that their breast cancer test results are delayed are given an interim diagnosis of anxiety....

Mental health diagnoses are handed out like Smarties (or M&Ms)

.

 

[Stukindawski]

I've heard it argued the true prevalence rate of mental illness is more like 50 in 1000 and that diagnosis of natural human processes accounts for the rest.

A question I'd like to throw out to anyone who wants to answer it is, would you define a mental injury separate from a mental illness and if so, how would you make the distinction?

 

[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.

It always can, all you have to do is declare it a conspiracy, your opinion is as valid as mine but it's best to remember the truth is seperate to both.

 

[Holmsey]

It wouldn't tell us anything.

You say it wouldn't tell us anything and then you go on to list what it would tell us, even if only telling us again and again then that's my point, you start looking like you have two heads when you simply deny the truth, from your standpoing going along with the Psyc's is therefore the quickest way to end their involvement, no?

Although the PACE Trial used a questionable methodology, the evidence doesn't get better in terms of showing that CBT and GET are almost useless. On all objective measures, CBT was found to be useless, and GET was little better, leaving the average patient severely disabled.

The key questionable was changing the measures, that doesn't change the data gathered, after that you're back to arging around what the data actually tells us and it does tell us that there was a difference (GET). Even Wessely and White have admitted it's not much of a difference. From everything I've read our main gripe doesn't seem to be that it's being missrepresented 'now' but that it was over egged, and reported in an exagerated way on completion. Mar is currently pursuing that and frankly that's the best approach.

Employment hours were not increased, and benefits claims were not reduced.

Actually unless you have access to something that I understand even Mar beleives has not been released then you can't claim that all you can say is they have never said how many did. Back to knowing before we know!

Some patients may well find CBT and GET useful, if nothing else is on offer to them.

Interesting admission, so how many have to get better before my suggestion we co-operate rather than restist is seen to be of real benefit, how many patients out there are influenced by the posts on this site which decry both treatments without ever giving them a go. Maybe we are responsible for stopping 5 - 10 percent from getting better, we'll never know as long as we hold to our current confrontational course. Certainly I have personall experience of professional CBT, and it was helpfull, it wasn't a cure but I learned some usefull coping strategies and I came away with a more balanced view of what it actually was, but then my therapist laughted at the idea it could cure ME/CFS.

But the PACE Trial demonstrated that CBT had zero effect in terms of improving physical disability, when measured objectively.[/quote]
Makes sense to me, lets show it again and again.

So, maybe, instead of mis-promoting CBT and GET as cures for CFS/ME, whilst at the same time suggesting that CFS/ME is a behavioural disorder, based on a fear of exercise, they should start looking at support systems that help support people during a time of crisis.

How many decades will it take before we all realise this isn't going to happen, trying the same things over and over rarely gets a different result.

I repeat, CBT had zero effect on improving physical disability, using the objective measure.

Yep, I've read the reports and I don't remember claiming otherwise so why are we labouring the point?

 

[Bob]

Holmsey

I don't apologise for repeating the results of the PACE and FINE Trials, and I will keep on doing so because they provide valuable evidence about CBT and GET that wasn't available before.

IMO, the PACE and FINE Trials disprove the model of illness upon which they were based. (i.e. Wessely's theoretical illness model.)

To be clear about GET, it also failed to demonstrate clinical usefulness in the 6 minute walking distance test, because the results were so meagre. So there were no useful or meaningful improvements for either CBT or GET, when measured objectively.

As for your suggestion about playing along with the psychs, I think that's the most absurd idea. An analogy would to be to bang your head on a brick wall, just to try to prove that it didn't cure headaches. A small number of people would probably report that it did cure their headache, because their head went numb. And the psychs would convince everyone that it was good for patients anyway. Just as they have done with CBT and GET.

To answer some of your points:

You say it wouldn't tell us anything and then you go on to list what it would tell us, even if only telling us again and again then that's my point, you start looking like you have two heads when you simply deny the truth, from your standpoing going along with the Psyc's is therefore the quickest way to end their involvement, no?

I don't understand what you mean by two heads and denying the truth. I've been discussing the facts, I'm not aware of any contradiction in my discussion.
Well, except when I say that the Trial used questionable methodologies, and then heavily promote the results. I suppose that is a contradiction. But my point is that improving the methodologies would only take the result in one direction, so I think it's safe to say that the results of the PACE Trial are the very best that they could have extracted from it.

So, for all its faults, the PACE Trial is able to demonstrate some issues better than anecdotal evidence, because it is quite a high powered medical trial, even taking into account its weaknesses.

Even as the results have been flattered, by constantly changing the measures and thresholds, and by not publishing all of the data, the results are still very poor.

I think it's the best evidence we have.

The key questionable was changing the measures, that doesn't change the data gathered,

Changing the measures is an important aspect, but there are other questionable aspects of the methodology.
For example, they did not use the NICE or CDC definition of CFS, but recruited the broadest possible spectrum of chronically fatigued patients.
The minimum change needed to record a clinically 'useful' difference, was so small as to be meaningless. Only one question needed to be answered differently on each patient's questionnaire. Given that the answers were subjective, and that the study was vulnerable to bias, this does not seem very rigorous standard.
Then there was the absence of the best type of objective evidence; the actometers.
And there was missing data for the 6MWDT.

...after that you're back to arging around what the data actually tells us and it does tell us that there was a difference (GET).

A difference is not the same as a meaningful difference.
The difference for GET on the 6 minute walking distance test was not meaningful, looking at it in either relative terms or absolute terms.
When you look at how many participants dropped out of the 6MWDT, and the absence of data to explain why they dropped out, and the inappropriate use of a 6MWDT to measure the function of CFS/ME patients, then it becomes even less meaningful.
And of course, the actometer data, which would have been superior evidence, was not provided.

The evidence from PACE is quite clear, despite its weaknesses, and even though much data is missing.

Employment hours were not increased, and benefits claims were not reduced.

Actually unless you have access to something that I understand even Mar beleives has not been released then you can't claim that all you can say is they have never said how many did. Back to knowing before we know!

The employment data has indeed been released, in the cost analysis paper.
There was no improvement in average employment, and there was no improvement in the number of participants who lost hours of work.
These results haven't been widely understood or advertised yet, but I hope they will be, in time.

Some patients may well find CBT and GET useful, if nothing else is on offer to them.

Interesting admission, so how many have to get better before my suggestion we co-operate rather than restist is seen to be of real benefit, how many patients out there are influenced by the posts on this site which decry both treatments without ever giving them a go. Maybe we are responsible for stopping 5 - 10 percent from getting better, we'll never know as long as we hold to our current confrontational course. Certainly I have personall experience of professional CBT, and it was helpfull, it wasn't a cure but I learned some usefull coping strategies and I came away with a more balanced view of what it actually was, but then my therapist laughted at the idea it could cure ME/CFS.

I don't understand your use of the word 'admission'. I'm just basing my statements on the available facts. The PACE Trial showed that some people find CBT and GET 'useful' (16%), but that doesn't mean that CBT and GET have physical therapeutic value.
Is it really worth rolling these therapies out if so few find them useful, and they don't have any actual therapeutic value?
Surely it is sensible to look for something that most patients find useful.

I'm glad that you had a positive experience of CBT.
Patient surveys show that's not always the case.
And I'm glad that you had a therapist who knew that CBT and GET would not cure CFS/ME.
Clearly that's not always the case, or the PACE Trial would not have gone ahead.

Have you thought that some other types of therapies might have been more helpful, such as the ones I suggested in a previous post?

Also it's not just a case of trying CBT and GET to see if they are helpful.
A high proportion of patients have reported harm after CBT and GET.
This isn't surprising, considering the nature of CFS/ME.

I wouldn't have such an issue with CBT and GET if they were promoted honestly:
If they told patients, up front, that CBT and GET wouldn't make any meaningful difference to their disability; that only 16% of fatigued patients would find CBT and GET useful; that patients would still be severely disabled after treatment with CBT and GET; that many patients find CBT and GET harmful; that some patients say they have been permanently harmed by CBT and GET; that CBT and GET ignore and misunderstand the real nature of ME; that pacing would be more helpful and appropriate; that other therapies or education might be more helpful, such as counselling or pacing information; and that CBT and GET were based on a flawed model of illness...

Oh, on second thoughts... I would still have a major issue with them.

 

[Holmsey]

Holmsey

I don't apologise for repeating the results of the PACE and FINE Trials, and I will keep on doing so because they provide valuable evidence about CBT and GET that wasn't available before.

Not a problem for me, as long as you're quoting the results and not an interpretation of the results.

To be clear about GET, it also failed to demonstrate clinical usefulness in the 6 minute walking distance test, because the results were so meagre. So there were no useful or meaningful improvements for either CBT or GET, when measured objectively.

I don't think you know that, unless you have results by individual, which I don't, then you're assuming that a statisticaly insignificant average equates to zero success in all cases, that would be very unusual. See, that's why there's debate, that's why there's different views, there's never a single way to look at statistics or averages.

As for your suggestion about playing along with the psychs, I think that's the most absurd idea. An analogy would to be to bang your head on a brick wall, just to try to prove that it didn't cure headaches. A small number of people would probably report that it did cure their headache, because their head went numb. And the psychs would convince everyone that it was good for patients anyway. Just as they have done with CBT and GET.

I accept you think it's absurd, I don't, and I've outlined why. IMO a more appropriate equivelent of beating your head of a wall is to do something you know fails more often expecting that by increasing the number of times you do it that outcome will change.

I don't understand what you mean by two heads and denying the truth.

I was making reference to something I'd already said in an earlier posting.

As I said I've read enough of the PACE related threads to know the lines of objection.

 

[Holmsey]

On this point I have some agreement. Given that some people with ME and CFS are going to engage in CBT/GET, why not set up a register for those who do? We could then independently track long term outcomes. This would be superior to retrospective surveys.

Personally they would not get me signing up however, nor would I recommend anyone do so. To encourage people to sign up is morally and ethically wrong in my view. Its tantamount to getting people to sign up for abuse and long term worsening of disability. That is unconscionable.

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.
Scaring someone out of it with outlandish claims, which are prevelent throughout the threads of this site is however likely stopping sufferers from achieving a better life condition, based on the evidence from this thread alone.
Now that is immoral, especially when the posters know their motivation is not to disseminate the truth but attack what they see as the opposition.

GET is another situation, and it would be morally wrong to encourage someone to undertake that without knowing all the facts, I wasn't suggesting that though, and again there is some evidence for imporved outcome for some when this is proberly done, no matter how little no one person can decide that everybody else should abstane.

 

[ukxmrv]

For a person with ME a session with a CBT therapist causes PEM. Even if the therapist would visit it would still cause this because talking and listening to someone for an hour is a very heavy use of energy and strength.

In addition if the CBT therapist required any homework then that is another possible risk of PEM

If the PWME needs to travel to a clinic to see the Therapist then PEM is likely. If the Therapist upsets or stresses out the PWME and causes extra work, complaints, nightmares, lack of sleep then health can deteriorate in these circumstances.

Therefore CBT carries risks and possible damage to the patient given these circumstances of the disease

How do I know - because this is what happened to me.

 

[Bob]

To be clear about GET, it also failed to demonstrate clinical usefulness in the 6 minute walking distance test, because the results were so meagre. So there were no useful or meaningful improvements for either CBT or GET, when measured objectively.

I don't think you know that, unless you have results by individual, which I don't, then you're assuming that a statisticaly insignificant average equates to zero success in all cases, that would be very unusual. See, that's why there's debate, that's why there's different views, there's never a single way to look at statistics or averages.

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.

 

[Bob]

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.

Here's your evidence:

ME Association patient survey 2008:
http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf

Action for ME patient survey 2010:
http://www.actionforme.org.uk/get-i...t-and-exercise-on-prescription-survey-results

Action for ME patient survey 2008:
http://www.actionforme.org.uk/get-i...ch-treatments-have-other-people-found-helpful

Scaring someone out of it with outlandish claims, which are prevelent throughout the threads of this site is however likely stopping sufferers from achieving a better life condition, based on the evidence from this thread alone.
Now that is immoral, especially when the posters know their motivation is not to disseminate the truth but attack what they see as the opposition.

Personally, I've simply been quoting the evidence.

I think the outlandish claims are the ones in the PACE Trial's 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 false in PACE and FINE, and we all know that they are a travesty of the truth, based on our personal experiences.

If PACE had proved a great success, then the evidence would be quite different. But CBT and GET failed to demonstrate what has been claimed by their proponents.

GET is another situation, and it would be morally wrong to encourage someone to undertake that without knowing all the facts, I wasn't suggesting that though, and again there is some evidence for imporved outcome for some when this is proberly done, no matter how little no one person can decide that everybody else should abstane.

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.

I don't know how it can be justified to recommend CBT or GET for CFS/ME patients, based on FINE, PACE, and the patient surveys.

Nevermind the way the inappropriate and disproven hypothetical psychiatric illness-models have diverted research funds, and cause some/many medics, and the media, to mis-understand the nature of CFS/ME.

 

[Holmsey]

Do one in four really have a mental health issue every year?

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.