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

[Snow Leopard]

He/they just like to say that such a grey area exists and sometimes include a few simplistic arguments, and then say that a distinction between mind and body is "unhelpful" for CFS, then use these to dismiss criticism of the cognitive behavioural approach.

It's funny, because pushing CBT/GET as the only treatments sure looks like a dualistic response. If he was against dualism, why isn't he outspoken about the need for far more biomedical research along with sociological research? Why does he only talk about psychological research? That seems a bit dualistic to me.

 

[alex3619]

Defending the Indefensible?

http://www.investinme.org/Article433-Defending the Indefensible.htm
by Margaret Williams 27th December 2011

I read this piece before but the commentary is easier to read on the site than on Co-Cure. This compares the biopsychosocial CBT/GET agenda to Zombie science, and the failure of "evidence" based medicine.

Bye
Alex

PS You might also like to read this: http://heroesnotzombies.com/2011/09/25/four-steps-to-improve-evidence-based-medicine/

 

[justinreilly]

Just sent an email into the journal asking them to retract and in support of Margaret's piece. Let's please all write!

fstjournal@foundation.org.uk

re: Simon Wessely; Health in mind and body; The Journal of the Foundation for Science and Technology: 2011:20:7: 9 11

Ladies and Gentlemen:

I write in full support of Margaret William's objections, link below, to the above article by Prof. Wessely in the Journal. What will you do to remedy the gross inaccuracies and lies in Prof. Wessely's article? Retraction seems to be the only reasonable solution. Please contact me with your thoughts or plans. Thank you for your consideration.

http://www.meactionuk.org.uk/Defending-the-indefensible.htm

Sincerely,
Justin Reilly, esq.
ME Law & Policy Center

 

[Esther12]

Just sent an email into the journal asking them to retract and in support of Margaret's piece. Let's please all write!

fstjournal@foundation.org.uk

I know what you mean.... but i don't think that the journal's editors are likely to respond at all positively to an e-mail phrased like that (eg: people hate accusations of lying).

Admittedly, I don't think that they'd be likely to respond particularly positively to a more cautiously phrased e-mail either.

 

[Dolphin]

From Co-Cure https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=2163 :

[Submitted by Susanna Agardy]


Here is my letter to fst journal for archives.
Happy New Year to you.
Susanna

----- Original Message -----
*From:* Susanna
*To:* fstjournal@foundation.org.uk <mailto:fstjournal@foundation.org.uk>
*Sent:* Tuesday, January 03, 2012 5:56 PM
*Subject:* Health in mind and body, Simon Wessely

Dear Editor,

Re: Health in mind and body,

Simon Wessely, fst journal December 2011

http://www.foundation.org.uk/journal/pdf/fst_20_07.pdf

In this article Prof. Wessely repeats the assumptions about Chronis
Fatigue Syndrome which he has been voicing for some time.

The problem is that people referred to as having CFS have been ambushed
by a serious, chronic illness which medical science has not yet come to
grips with.Prof. Wessely and his colleagues have determined that this
can?t happen.(The same was said of Helicobacter Pylori.)CFS has been
declared by these psychiatrists to be ?unexplained? by medicine and the
leap was made to the default diagnosis of a psychological condition. No
evidence has been produced of this and the psychiatric label has been
slapped on patients far and wide who have never been examined.Evidence
of serious biomedical problems in these patients has been resolutely
ignored.Where is the science?

Prof. Wessely makes some well-worn claims:

- ?Patients are portrayed as hostile to psychological explanation;
etc.This is because they have been given the wrong diagnosis, one which
sidesteps patients? severe physical symptoms and ignores the fact that
many of them don?t suffer from psychopathological conditions.

- ?the (PACE) trial is a thing of beauty?: only if you ignore its
glaring faults, such a miscellaneous, unrepresentative sample and the
shifting of goal-posts in the course of the study, to name just a few
problems.

- ?We now have two treatments that we can recommend with confidence to
our patients.?: only if you ignore the adverse reactions of patients
upon whom the CBT/GET treatments are foisted without any warning of risk
that they can worsen your health, which GET has certainly done.There is
enough evidence that graded exercise is an unsuitable treatment for this
condition. It is only a matter of listening to patients and the research
evidence.It is reckless to subject patients to this treatment.The FINE
study, which tests the same hypothesis, by the same investigators,
produced no evidence of worthwhile gain from GET. It is conveniently
forgotten by Prof. Wessely.

Perhaps the failure of patients to get better from GET would be
explained by Prof Wessely?s speculation that patients are too stubborn
and do not want to get well. Any such claim only illustrates the
professors? refusal to admit any evidence which fails to confirm his
favourite beliefs.

It is notable that Prof. Wessely?s peers have declined to subject the
PACE study to rigorous scientific scrutiny. His say-so diagnosis in
relation to CFS seems to be accepted as dogma.How is it that he and his
colleagues are exempt from critical scientific scrutiny?Have his peers
actually examined the PACE study in detail?When a study of this standard
passes as good science there are reasons for losing confidence in
scientific standards.

Yet, when patients or their representative have provided critiques of
the study they have been denigrated and abused.The Wessely school of
belief about CFS, the PACE study and the conclusions that are drawn from
them are not just academic questions to patients. Their lives are
affected for the worse by them.

Susanna Agardy

Australia

 

[justinreilly]

Thanks out to Susanna for this very good letter.

 

[Esther12]

Just thought I'd whack these old Wessely quotes I stumbled upon in here. He's assessing some trial for MCS (I've not read the details of the trial, but his comments reminded me of this thread for some reason). I've ended up quoting about 1/3 of what he wrote, so it could be best to skip to the link at the end, and read it all if you fancy. I just pulled out the bits that amused me:

Thus, the paradox of clinical
research is that the more we believe in a treatment, and the greater our conviction that our
treatment is a good thing, the greater the scepticism we should have about the results of
our studies, and the more scrupulously should the investigator observe the appropriate
methodologies-if only to silence critics like me.

The next explanation is related to observer and subject bias. Neither the investigator nor
the patients were blind to the procedures involved, and both were aware of the purpose of
the study. Both have a considerable investment in proving the procedures correct. Both have
endured scepticism, criticism and disbelief over the years. The patients are thus extremely
likely to respond on a questionnaire favourably-they have a probably profound response
bias. If not, they would be betraying the doctors who have tried to help them, believe them
and represent their last hope. I find in my practice that so strong is this identification,
and so profound the gratitude towards those doctors who have believed the patient and
given them a credible, guilt-free explanation of their symptoms, that this can override
virtually anything else.

This is fine for maximizing the
non-specific effects of treatment, but not good for ensuring that responses are accurate.
A similar argument applies to the relatives. In this circumstance, it would have been
important to include either some objective measures, such as return to work or giving up
disability payments, or the views of some more neutral observer, such as the general
practitioner.

That brings me to the last alternative, and the one that 1 favour. The effects reported here
are due to the non-specific effects of treatment, and not the actual treatment itself. No one
now questions the vital role that doctors themselves play in treatment. Being empathic,
listening, treating with respect, giving explanations that are acceptable to the patient,
restoring hope, and so on, are essential skills, hard to teach, but easy to recognize in those
who have them. I have never met the authors of this paper, but my intuition is that they
possess these skills. This is sometimes called the placebo effect-with the subtext that it is
not to be taken seriously-but it is one of the most powerful treatments available to the
doctor. We also know that, whenever randomized controlled trials are carried out in samples
of patients similar to those described here, those receiving the placebo intervention often
make remarkable improvements with that alone. The most probable explanation for both the
observed reactions of the patients to challenges, and for the observed improvements over
time, is a non-specific reaction. Hence, the importance of a placebo control, both for
determining the presence of food or chemical sensitivity/allergy/intolerance, and for
determining the response to treatment, cannot be overstated [4, 51].

This one reminds me of a study White irritatingly spins, so I'm including it too:

In any audit, as in any longitudinal study, the easiest way to ruin the
study is by losses to follow-up. It is axiomatic that those lost to follow-up are those whom
treatment has not helped-hence the importance placed on intention to treat analyses

The message of this paper is that management worked. On the surface this seems true,
although I have outlined my preferred explanation of why it worked. However, some
concerns remain. In my clinic, I routinely see patients who have, according to their own
report, improved on some treatment or other. Nevertheless, they continue to live lives of
astonishing restriction, often couched in such phrases as living within my limits. Hence,
they have managed to reduce symptoms, but at the expense of continued avoidances and
behavioural restrictions. No disinterested observer could claim this as a satisfactory
outcome. We know that in most chronic diseases, treatments aimed at symptom reduction
are usually inferior, often vastly so, to those aimed at increasing tolerance of symptoms
and reducing avoidance. In this study, I have some concerns. The patients certainly
remained symptomatic-although I searched in vain for a simple measure such as the mean
number of symptoms endorsed after treatment. Over half of one cohort were still using
self-administered vaccines, and over half were still taking diets. In the other, enzymepotentiated
desensitization was continuing in over half. I would need convincing that the
sample really had made meaningful improvements justifying the expenses involved (of
which, incidentally, I find no mention, but assume that inpatient admission in particular is
not cheap).

What has been achieved by this paper? Overall, very little. It has not excluded either a
psychological or non-specific mechanism, or demonstrated convincing and cost-effective
evidence of improvement. The enthusiasts who carried out the study have indeed confirmed
to their own satisfaction that they are doing a good job. The sceptics, while applauding their
dedication, remain unconvinced. Some might add that the sceptics will never be convinced.
Perhaps. However, the experience of Chiropracty suggests not. The chiropractors submitted
their interventions to a true test-a randomized controlled trial carried out by an external
body. It was perfectly possible that the results could have been negative. They were not.
A single trial is rarely sufficient to change clinical practice, but there is no doubt that this
rigorous study, because it could have been negative, has done more for the profession than
any amount of clinical audit. It also suggests that the sceptical remain open to the
persuasive powers of well-conducted scientific research.

http://ad-teaching.informatik.uni-f...6/6/1/13590849608999132/13590849608999132.pdf

 

[Sean]

In this circumstance, it would have been important to include either some objective measures, such as return to work or giving up disability payments...

This is sometimes called the placebo effect-with the subtext that it is not to be taken seriously-but it is one of the most powerful treatments available to the doctor.

No, it is not. At best it is marginal. The reason why the likes of Wessely are so infatuated with placebo is that it is the core proposed mechanism in their CFS model (as 'nocebo'). If the placebo effect is small or non-existent, then their model simply crumbles.

What has been achieved by this paper? Overall, very little. It has not..., ...demonstrated convincing and cost-effective evidence of improvement. The enthusiasts who carried out the study have indeed confirmed to their own satisfaction that they are doing a good job.

My thoughts exactly about PACE.

Even after 25 years of knowing about these guys and their work, their blatant hypocrisy still takes my breath away.

 

[Esther12]

Just thought I'd whack these old Wessely quotes I stumbled upon in here. He's assessing some trial for MCS (I've not read the details of the trial, but his comments reminded me of this thread for some reason). I've ended up quoting about 1/3 of what he wrote, so it could be best to skip to the link at the end, and read it all if you fancy. I just pulled out the bits that amused me:

...

http://ad-teaching.informatik.uni-f...6/6/1/13590849608999132/13590849608999132.pdf

This seems to be off-line now, and I cannot find it. The Wessely comments look more and more relevent to PACE to me. Anyone know which paper I was quote (from post 67)? Google has failed me.

 

[Dolphin]

This seems to be off-line now, and I cannot find it. The Wessely comments look more and more relevent to PACE to me. Anyone know which paper I was quote (from post 67)? Google has failed me.

Given the URL, I thought I might find it on this page:
http://informahealthcare.com/toc/cjne/6/1
however, I can't see a S Wessely paper on the page.
---
I searched Wessely in the journal and got five results. The third one is from the right issue so it might be that:

1. Editorial: Evaluating MCS
Damien Downing
Journal of Nutritional and Environmental Medicine Jan 2008, Vol. 17, No. 3, Pages 145-147
Citation | Full Text | PDF (101 KB) | PDF Plus (103 KB) | Add to Favourites | Related
2. A ‘Thick File’ Patient—‘PIMS’
David L. J. Freed
Journal of Nutritional and Environmental Medicine Jan 2003, Vol. 13, No. 3, Pages 185-194
Citation | PDF (61 KB) | PDF Plus (63 KB) | Add to Favourites | Related
3. Polysymptomatic Patients: A Two-centre Outcome Audit Study
D. Jonathan Maberly, Honor M. Anthony, Sybil Birtwistle
Journal of Nutritional and Environmental Medicine Jan 1996, Vol. 6, No. 1, Pages 7-32
Summary | References | PDF (1983 KB) | PDF Plus (788 KB) | Add to Favourites | Related
4. Book Reviews
Keith Eaton
Journal of Nutritional and Environmental Medicine Jan 1994, Vol. 4, No. 4, Pages 467-470
Summary | PDF (275 KB) | PDF Plus (137 KB) | Add to Favourites | Related
5. Book Reviews

Journal of Nutritional and Environmental Medicine Jan 1992, Vol. 3, No. 1, Pages 69-72
Summary | References | PDF (257 KB) | PDF Plus (160 KB) | Add to Favourites | Related



Read More: http://informahealthcare.com/action...mQuery=true&postback=true&categoryId=40054154

It's not showing up as free in Google Scholar.

ETA: Found it. Had saved it. My habit of saving full papers even if I never know whether I might use them paid off. I'll e-mail it to you.

 

[Esther12]

Given the URL, I thought I might find it on this page:
http://informahealthcare.com/toc/cjne/6/1
however, I can't see a S Wessely paper on the page.
---
I searched Wessely in the journal and got five results. The third one is from the right issue so it might be that:

Good sleuthing!

What did you think - some of those quotes sounded pretty good for aiming back at PACE. I think I pulled them out before we had the employment data.