Interview with Professor Simon Wessely (The Times (UK), August 6) - needs replies

[Dolphin]

Interview with Professor Simon Wessely: http://www.meassociation.org.uk/?p=7552

Letters should be sent to: letters@thetimes.co.uk

I didn't get an acknowledgement E-mail this time but last time got this:

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[Esther12]

I love how, of all this sympathetic coverage for Wessely, none of it actually explains what he thinks causes CFS or how patients should be treated, never mind the specifics of why so many patients hate him.

It's just a very English submission to authority, and an assumption that any patient that feels mistreated by a psychiatrist must be opposed to all psychiatry. It's a really poor reflection of our media and our society.

 

[Min]

That makes four extremely biased articles denigrating us in the Times, and one in the Sunday Times, all within the space of a few days.

 

[kaffiend]

I'm perhaps being too charitable, but it seems that Prof. Wessely believes what he says, i.e., he doesn't necessarily intend to keep patients down, etc. Rather, he seems to lack insight into his own statements and the effects they have on the patient community.

Simply replace (paraphrased) "I no longer work with X patient population. I go to Iraq and Afghanistan where it's safer."

He's trying to be glib or funny, but if X is replaced with any other afflicted population, it would be at best, a stupid thing to say and at worst a morally unacceptable statement.

His words and actions have a damaging effect though. They have that affect on me, and I'm in the U.S. I know a lot of people in academia who think (too) broadly in this way; he seems to view ME as an intellectual problem to solve, not a medical or scientific one. I would also suspect that his views in a nature vs. nurture argument come down heavily on the side of nurture, and his cognitive biases for this are revealed through his statements.

He's clearly the wrong person for the job of figuring out ME. I'm not sure what kinds of patients he sees. They are likely to be a self-selected group but even at that, a 1/3 success rate is abysmal. Also, cancer patients are likely to pursue psychological therapy because their cancer is being addressed by the medical community.

If I were to write a letter in response to all this recent media attention (and I wouldn't), I would avoid any mention of intentionality on Prof. Wessely's part. It won't get you anywhere. The media are sympathetic to his views and these articles drive people to comment boards, and in the most cynical view, to the advertisements that generate revenue for the websites. Don't play along.

 

[leela]

God, this guy gets SO much airtime! Ack!!
Send your news outlets this little gem:
http://www.fda.gov/biologicsbloodvaccines/scienceresearch/biologicsresearchareas/ucm127327.htm

 

[Trooper]

Reply sent, thanks for posting Dolphin

 

[Dolphin]

Reply sent, thanks for posting Dolphin

Great, Trooper.

 

[Dolphin]

I know of 4 letters (incl. my own) that have gone it. It's good but I can't imagine this letter was popular so I'd be hoping for more.

 

[Hip]

God, this guy gets SO much airtime! Ack!!
Send your news outlets this little gem:
http://www.fda.gov/biologicsbloodvaccines/scienceresearch/biologicsresearchareas/ucm127327.htm

Yes, I cringe at his over-exposure in the media. Wessely has somehow managed to appoint himself as spokesperson for people with ME. Who gave him the right to do this? Nobody.

At least this means that Wessely is not entirely talentless: he does have some media savvy, and he does know how to wield influence for his own self-promotion and self-aggrandizement.

I guess he thinks that these talents he has make up for knowing diddly-squat about the immune system, or any other metabolic system associated with ME/CFS pathophysiology for that matter.

How did we allow Wessely to take this de facto ME spokesperson position? What we need is our own spokesperson to represent ME to the press.

We need to employ someone who understands the media, and uses their media savvy for the benefit of ME patients.

 

[Snow Leopard]

On the other hand, all this media exposure might also reveal other truths to the general public: Wessley is out of touch with patients for example.

 

[redo]

Simply replace (paraphrased) "I no longer work with X patient population. I go to Iraq and Afghanistan where it's safer."

He's trying to be glib or funny, but if X is replaced with any other afflicted population, it would be at best, a stupid thing to say and at worst a morally unacceptable statement.

Yes. It would. Replacing x with MS, cancer or any other somatic disease for that matter wouldn't work. The only thing I can get to fit, is "crazy people". I guess he thinks he's funny. I really hope he get's a oversized vaccine before going to Iraq, and developes something like the GWI. That would be funny. And then he comes back to the UK for some harsh rounds of CBT.

 

[Enid]

Done all I can Snow Leopard - the man's tactics are well described by Hillary Johnson and C of Marr in the House of Lords on other threads. That the interviewer failed to investigate ME (open Pandora's Box) and take simply at face value a man known to have worked himself to a key position in the socio-medical world, has nothing to do with investgative journalism. W et al of course are not scientists in the proper sense - their theorectical constructs cannot be tested conveniently for them. The so called scientists apparently threatened (3) are from this field and as far as I know still carrying on their nonesense (not "late"). Since all concerned are very much alive and "kicking" an investigation of the long history of ME in the UK bringing so much opprobrium on their attempts to retain "stranglehold" should have been the real story for any decent journalist. This one failed even to grasp that the warning - scientists will be put off research by W - refers only to opposition to him and his methods.

 

[Firestormm]

Yes, I cringe at his over-exposure in the media. Wessely has somehow managed to appoint himself as spokesperson for people with ME. Who gave him the right to do this? Nobody.

Well one could argue - I presume he and the media would - that the extremists did. Of course he has been one of the more influential people in this field - but what actually prompted this latest exposure I don't know.

What put Hawkes on the case in the first place? No need to speculate Dr Crawley said she had decided to go public about her own intimidation so that might have led to the more recent BBC interviews I suppose - but this I would suggest all goes back to the PACE trial myself and the Lancet et al.

What we need is our own spokesperson to represent ME to the press.

You would think that was easy wouldn't you? I would. Of course it wouldn't be possible to have one spokesperson that all patients (including presumably the activists) were always in agreement with.

 

[Ian McLachlan]

Well one could argue - I presume he and the media would - that the extremists did.

No, medicines lack of ability to adequately regulate itself did.

 

[Enid]

I think you are right Ian - two Docs in my family are specialists - Neurology and Radiography at the advance end and yet their conversation includes "we are not quite sure yet". W and co seem to be practising something quite different.

 

[redo]

I agree Enid. The (normal) and professional thing to do is to add "we are not quite sure yet". I wonder why W is so sure, when he lacks evidence, and on top of that the whole patient community goes against him.

With basically any mental disorder, whether it be panic disorder, OCD, PTSD, bipolarity, schizophrenia or other things, many patients agree totally that yes, they are mentally ill. I just can't believe him.

 

[drjohn]

Re: Doctors hate mail is sent by the people he tried to cure, The Times, 6 August 2011

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS

Sir,

Substantial parts of Stefanie Marsh's piece with Professor Simon Wessely (Doctors hate mail is sent by the people he tried to cure, The Times, 6 August 2011 --- ME Asociation link http://www.meassociation.org.uk/?p=7552) have been recycled from several previous sources, already distilled into an exemplar interview (When illness is mostly in the mind, New Scientist, 11 March 2009 -- only available by subscription), which attracted over 700 comments, the vast majority not hate-fuelled at all but intelligent observations and questions from independent research scientists, from various fields, which remain unanswered to this day.

I remember asking, for example, which, "ambiguous territory, somewhere between medicine and psychiatry," could Professor Wessely be thinking of as a suitable speciality. Isn't psychiatry a branch of medicine? I also pointed out that his assertion that, "ME is virtually unknown in France, Italy and Spain ... " will come as a bit of a shock to those running the thriving support groups in every one of these countries. It is also surprising that Professor Wessely is giving this interview today, despite having claimed to have retired 10 years ago. One wouldn't expect his name to appear on papers after 2001, or for him to be involved in treatment of any kind and yet here he is again.

He issues, as axiomatic, a peculiarly personal philosophy, "Like it or not, CFS is not simply an illness but a cultural phenomenon and metaphor for our times," in a way that suggests one would be foolish or defiant to demur from it. It isn't Professor Wessely, personally, his critics do not like but the fundamentally flawed research from which his conclusions are drawn. M.E. and CFS are not the same at all, or equally qualified research scientists, in every country in the world are all wrong and only his is the right way. Whether Professor Wessely likes to hear it or not, CFS is a polluted sample of patients with a variety of illnesses, having different causes and findings cannot be extrapolated to M.E. sufferers. Yet he persists in doing so.

Selective in his choice of literature, Professor Wessely did not direct Stefanie to a paper by Twisk & Maes (September 2009), which shows that all research to date, supported by anecdotal evidence from M.E. sufferers, proves that Cognitive Behaviour Therapy (CBT) is ineffective and Graded Exercise Therapy (GET) makes a majority worse. If taking CBT and GET, a third of patients make a full recovery, he didn't offer and Stefanie didn't ask, what happens to the other two-thirds and why is there not a substantial reduction in the number of people remaining ill for decades. It is not a statistic that I would regard as successful, especially if this third might have recovered, over time, with no treatment or some other treatment, perhaps drugs, taken concurrently. Professor Wessely may not have tried any "alternative" treatments at all but his opposite numbers at similar clinics, around the UK, have suggested patients try such things as Acupuncture, Emotional Freedom Techniques and Tai Chi, thus muddying the research waters even further and Dr Esther Crawley is currently assessing the unproven Lightning Process on children.

Perhaps the main reason why some people's frustration boils over into anger is that Professor Wessely and those of his school of thought and practice continue in this unjustified way, hogging all the money and distracting funding from promising biomedical research but I suggest that this energy would be better channelled into privately funded (because no public money is forthcoming) research of a quality that would allow Professor Wessely to retire and hang up his whatever psychiatrists hang up.

Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org

 

[redo]

Whether Professor Wessely likes to hear it or not, CFS is a polluted sample of patients with a variety of illnesses, having different causes and findings cannot be extrapolated to M.E. sufferers. Yet he persists in doing so.

Selective in his choice of literature, Professor Wessely did not direct Stefanie to a paper by Twisk & Maes (September 2009), which shows that all research to date, supported by anecdotal evidence from M.E. sufferers, proves that Cognitive Behaviour Therapy (CBT) is ineffective and Graded Exercise Therapy (GET) makes a majority worse. If taking CBT and GET, a third of patients make a full recovery, he didn't offer and Stefanie didn't ask, what happens to the other two-thirds and why is there not a substantial reduction in the number of people remaining ill for decades. It is not a statistic that I would regard as successful, especially if this third might have recovered, over time, with no treatment or some other treatment, perhaps drugs, taken concurrently. Professor Wessely may not have tried any "alternative" treatments at all but his opposite numbers at similar clinics, around the UK, have suggested patients try such things as Acupuncture, Emotional Freedom Techniques and Tai Chi, thus muddying the research waters even further and Dr Esther Crawley is currently assessing the unproven Lightning Process on children.

Yes, it's a polluted group indeed. And also, if Dr. W. asks 100 ME/CFS patients to do a treatment which is bacially to "get their act together", I guess those saying "yes" would be likely to be part of the branch he is working in, as some may have been put in the ME booth by an unknowing doctor. If he's left with 20 patients saying yes, where some may have mental illness and not CFS, and he manages to get a third worse and a third better, than I can't fathom why he's so certain he's right - and proud of his results.

 

[Bob]

I'm perhaps being too charitable, but it seems that Prof. Wessely believes what he says, i.e., he doesn't necessarily intend to keep patients down, etc. Rather, he seems to lack insight into his own statements and the effects they have on the patient community.

Yes, it is possible that delusion plays a role, along with a lack of insight. But I think that's too simplistic. There is an enormous amount of sophisticated and complex manipulation going on. And his reputation is at stake. I think that this is more than pure delusion. He seems very driven.

I'm not sure what kinds of patients he sees. They are likely to be a self-selected group but even at that, a 1/3 success rate is abysmal.

Yes, he seems to 'believe' that he 'cures' people. But as you say, a 1/3 success rate is not good. How do we know that those patients wouldn't improve anyway? The PACE Trial (which he was intimately involved with) proved that CBT and GET are not remotely curative, and benefit very few CFS/ME patients. He should study his own evidence.

I would avoid any mention of intentionality on Prof. Wessely's part.

I noticed that when I was writing to the BBC, that I might have come across as another one of those mad ME patients who like to rant about Wessely.
(It is hard not to foam at the mouth when talking about him!)
So it's probably good to have a few letters that don't mention him by name at all, but just explain the facts about ME.

 

[Bob]

He continues: Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.

I think that bit says it all.