S. Wessely: "PACE trial, which tested interventions with an impeccable safety record"

[Dolphin]

Lots of good points in your post, biophile.

Hasn't the large premorbid depression studies been exposed as flawed? Not that I would reject it out of hand, or find it surprising for broadly defined CFS which is problematically conflated with symptoms of depression and hence the call from some researchers for better criteria to avoid epidemiological artifacts. Perhaps Dolphin can remind me about the national cohort studies.

I'm afraid it's one area where I find I'm not so good at remembering the findings. I tend to think lots of people who are supposedly in the "pre-morbid" stage aren't at all but either have ME or CFS (or might have had in the past and are in a period of remission/relative remission which might still alter their responses e.g. about ever having depression). Also, the studies tend to highlight the positive findings and often don't explicitly highlight (or highlight much) the areas where they found a lack of association - so one factor could be found to be associated in one study, but not in two others, but people tend to remember the study where it was associated. Anyway, that's my excuse for not remembering it but maybe other people can remember what you are asking about.

 

[Sean]

SW: The main reason for this depressing reaction was the stigma that attaches to disorders perceived (rightly or wrongly) to be psychiatric in origin, whatever that means.

Lying piece of shit.

And if you don't know what 'psychiatric' means, then what the hell are you doing claiming to be a world renowned professor of psychiatry?

The patient community welcomed the Rituximab study not just because of...

But mostly because it was much more objective and falsifiable than psych based studies, and offered a new possible way forward.

 

[Snow Leopard]

I think in general we need to be more effective in the way we communicate, less reactive and more clear on our point of view.

The reason why patients dislike the psychiatric association is simply that psychiatric treatments don't work. How do we know that? Because all such approaches have failed to demonstrate objective improvements whenever such measures have been tested in clinical trials. Improvements on self report questionnaires aren't valid when you cannot control much of the biases through blinding.

The reason why we don't like Simon Wessley is because he behaves unscientifically. He spins the facts to suit his ideology and always seems to overlook the aforementioned evidence.

Patients don't 'hate' researchers who do research into Cognitive Behavioural Therapy who are more honest with the conclusions (eg it is only beneficial in terms of coping and not intended as a cure), for example Dr Friedberg and Dr Jason from the USA are well respected.

I can't deny that more skepticism was applied to PACE than Rituximab, when generalizing the responses from the online ME/CFS community.

I personally would argue there was plenty of scepticism (especially before the paper was released), but the fact is that it is apples and oranges - blinded vs unblinded. There has and continues to be plenty of debate whether CFS could be considered an autoimmune disorder or not, with plenty of people on this forum arguing that it is unlikely.

 

[oceanblue]

Despite multiple retirements, SW just can't let go of CFS. I think it might be an addiction.

Patient groups rejected the trial out of hand, and the internet was abuzz with abuse and allegations.

The main reason for this depressing reaction was the stigma that attaches to disorders perceived (rightly or wrongly) to be psychiatric in origin, whatever that means.

This has long been his contention, but what does he base it on? It's just an assertion, with no evidence to back it up. I vaguely remember a study that I thought found CFS patients did not particularly stigmatise mental illness - compared with other groups - and I thought SW was an author.

If one obtained identical results to the PACE trial, but this time with anti-viral drugs, the reaction would have been totally different.

This is exactly what did happen when a very small trial of a drug that modulates the immune system (and which has some nasty side effects) was greeted with acclaim from the same sources that tried to discredit the PACE trial, which tested interventions with an impeccable safety record.

Hard to compare the Rituximab trial with PACE; it's tiny by comparison and clearly needs replication. But what makes the Rituximab tantalisng is precisely because the results were NOT identical to PACE: the peak SF36 Physical Function gains in the treatment group were huge in a blinded study while the PACE SF36 gains were small in an unblinded study (making self-report bias a major concern). (Of course, the Rituximab gains were only transient: as the authors made clear, further studies are needed).

Again, SW seems to be setting up straw men rather than addressing the facts.

 

[Sean]

The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.

http://www.ncbi.nlm.nih.gov/pubmed/10616232

Authors: Wood B, Wessely S

Res ipsa loquitar.

 

[Sean]

Again, SW seems to be setting up straw men rather than addressing the facts.

Said it before, Wessely is primarily a propagandist, and setting up bogus straw men to avoid unpleasant facts is one of the main tactics of propagandists. His peer reviewed and especially his non-peer reviewed work is stuffed full of them. It is one of the main warning signs about him.

Read his second formal published comment on 'Postviral fatigue syndrome' (ME), he dismisses work from Parish and others in part because they are also patients, pompously declaring how important it is that

"clinical research should be carried out by those without the inevitable, albeit unconscious, biases caused by suffering this condition."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2545791/?page=1
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2545791/?page=2

Oh, the irony.

Wessely framed the debate to his favour early on, deliberately disempowered patients from commenting on research and clinical practice, all the while protesting how concerned he was for our welfare, and he did not improve after that.

Reminds of a quote from Tolstoy:

I sit on a man's back, choking him, and making him carry me, and yet assure myself and others that I am very sorry for him and wish to ease his lot by any means possible, except getting off his back.

Writings on Civil Disobedience and Nonviolence (1886)

 

[heapsreal]

i think SW gets off on all the hate mail and hate threads on him, i think he gets a power ego trip from reading everyones response to him. He is the one who needs very intensive therapy.

 

[oceanblue]

SW: Physical and psychological symptoms are closely linked. A study of 40,000 people at Camberwell measured the incidence of chronic fatigue and GHQ (a common depression or anxiety). It found a very close relationship. Further, the greater the number of symptoms, the more likely the patient was to develop a mood or anxiety disorder. These symptoms may be just non-specific markers for distress.

Sure, but largely this study was measuring explained fatigue and by far the most common explanation for the fatigue was psychosocial or psychological, as I pointed out elsewhere:

...
Fig 3 from this paper shows Chalder Fatigue score vs mean score for the General Health Questionnaire (GHQ-12), with a very strong correlation between the two. For convenience, I've reproduced it here as it's freely available in the open access document above; if anyone thinks this is a breach of copyright please let me know.
View attachment 5539
...
All particpants were asked what cause they attributed to their fatigue:
- 40% cited psychosocial causes eg work stress
- 17% cited psychological causes
- 15% cited physical causes
- 20% didn't answer this question, 7% cited other causes and 2% cited pregnancy.
Only 0.25% cited CFS.

So what we are looking at here is a graph of explained fatigue and, unsurprisingly, the most common cause of fatigue is psychological/psychosocial, but physical illness also causes fatigue. So what? CFS is about unexplained fatigue, and the graph tells us nothing about that.

Nice graph, strong correlation but it tells us nothing about whether or not psychological factors account for unexplained fatigue.

Separately, SW deserves some credit for recognising that CBT/GET has limitations:

Two treatments, graded exercise and CBT, clearly made a difference, although they certainly were not 'magic bullets'.

 

[Desdinova]

So any disorder without a known definite cause that he and his ilk sweep up are solely theirs. Any Challenge or assertion that contradicts their psychiatric viewpoints is deemed based in prejudice and discrimination against psychiatric disorders and illness.

He and his ilk spew lies, half truths and twisted words about a study that was flawed at best and manipulated at worst. And when all else fails they cry victim, and knowingly take words out of context and accuse their victims of making death threats. The victims become villains and the villains become victims and thus heroes. If it weren't so perverse it would be funny.

 

[Sean]

Separately, SW deserves some credit for recognising that CBT/GET has limitations:

Two treatments, graded exercise and CBT, clearly made a difference, although they certainly were not 'magic bullets'.

Understatement of the decade. And they did not clearly make a meaningful difference, Prof W, that is patently false.

He also made some comment about 10 years back that they were "not remotely curative".

Yet, early last year in particularly blatant puff-piece interview in the New Scientist (IIRC), he claimed he was curing about 1/3 of his CFS patients.

And now these wonder therapies are back to merely making a difference.

I have no doubt other contradictory statements about the degree of benefits of his approach can be found scattered throughout his public comments, and that in a couple of months he will spin it a different way again.

He deserves no credit at all for this slippery dishonest nonsense. He just can't admit he and his like minded colleagues have completely failed to deliver any substantial explanation or therapy, and have merely wasted 25 years of precious research time and patient's lives and goodwill in an increasingly obsessive and bizarre pursuit of this hollow psycho-drama fantasy.

 

[Marco]

With an estimated 40% of Europeans suffering from a mental illness compared to the estimated 0.5% suffering from an illness whose diagnostic label is popularly synonymous with malingering and we are supposed to be afraid of being stigmatised? Please!

http://www.reuters.com/article/2011/09/04/us-europe-mental-illness-idUSTRE7832JJ20110904

I say just ignore him. His opinions are being rapidly overtaken by science and all he can do is wind patients up hoping for some intemperate response or action that he can use to feed into his hysteria meme.

 

[Enid]

Who says this is mental illness - frankly have not got it - though psyches will do their wretched best to try to prove it's "all your mind" as one tried on me. Science and real medicine have overtaken that now.

 

[alex3619]

An unsubstantiated rumour

http://niceguidelines.blogspot.com/2011/12/rumours-have-it-that-lancet-is-about-to.html

Rumour: PACE trial paper is under consideration for retraction

This rumour is now circulating. It is unsubstantiated. It could be wrong. However there is an outside chance it is correct. This would help enormously in educating politicians and doctors about this issue.

Why am I so doubtful? Two reasons: first, its too good to be true. Second, if a source made a statement, it should be fully public. However, this might have been more a comment on the quiet, and not a statement.

In the mean time we need to contact everyone with an authoritative position in the UK as I said earlier, and invite them to make a reply to Wessely - we can't allow this to go unchallenged in a journal dedicated to forming public policy. If the journal will not accept a reply from such figures, we will still be better off as we will have caught them in bias.

Bye, Alex

 

[Dolphin]

http://niceguidelines.blogspot.com/2011/12/rumours-have-it-that-lancet-is-about-to.html

Rumour: PACE trial paper is under consideration for retraction

This rumour is now circulating. It is unsubstantiated. It could be wrong. However there is an outside chance it is correct. This would help enormously in educating politicians and doctors about this issue.

Why am I so doubtful? Two reasons: first, its too good to be true. Second, if a source made a statement, it should be fully public. However, this might have been more a comment on the quiet, and not a statement.

In the mean time we need to contact everyone with an authoritative position in the UK as I said earlier, and invite them to make a reply to Wessely - we can't allow this to go unchallenged in a journal dedicated to forming public policy. If the journal will not accept a reply from such figures, we will still be better off as we will have caught them in bias.

Bye, Alex

I think it's a joke. Reasons include that it came out just after the Lombardi et al and Lo et al papers were retracted. And while I disagree with the Lancet paper, I don't think it would reach the normal threshold for a psychiatric/psychological paper to be retracted.

 

[alex3619]

Hi Dolphin, it has occured to me that it might be a wind-up - less a joke than a joke on us. Any response we make to this should be considered and moderate. Bye, Alex

 

[Esther12]

I think it's a joke. Reasons include that it came out just after the Lombardi et al and Lo et al papers were retracted. And while I disagree with the Lancet paper, I don't think it would reach the normal threshold for a psychiatric/psychological paper to be retracted.

Yeah - the worst thing about it was the daft statistical analysis. There's a semi-decent (if not worth the cost) paper to be found in there somewhere.

 

[Esther12]

With an estimated 40% of Europeans suffering from a mental illness compared to the estimated 0.5% suffering from an illness whose diagnostic label is popularly synonymous with malingering and we are supposed to be afraid of being stigmatised? Please!

http://www.reuters.com/article/2011/09/04/us-europe-mental-illness-idUSTRE7832JJ20110904

The willingness to class 40% of the population as having had mental health problems seems to have innate political consequences - ones which others will not be slow to make use of:

http://www.dailymail.co.uk/news/art...sychotherapy-compares-Franklin-Roosevelt.html

 

[floydguy]

There's a semi-decent (if not worth the cost) paper to be found in there somewhere.

Is that the cost of the paper it was printed on? Not worth any more than that.

 

[WillowJ]

http://niceguidelines.blogspot.com/2011/12/rumours-have-it-that-lancet-is-about-to.html

....

I agree with Dolphin and with Alex's reservations. One of the reasons given on the blog is "not withstood the test of independent verification". There has not been time, since its publication, for this. If that were a reason, The Lancet wouldn't have accepted the paper in the first place, as there were already plenty of contraditctory data (unless they are counting Rituxan as if it were the first proof that "CFS" is not deconditioning and therefore not recoverable via reconditioning and counseling?).

 

[Sean]

I will be amazed if the PACE paper is retracted anytime soon. It will take years to get the garbage in there properly exposed and dealt with. The authors certainly will not retract willingly, and I am pretty sure that the current chief editor of The Lancet will not do it willingly either. It would effectively be the end of their careers and reputations.