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Letters about interview with Professor Simon Wessely
Tuesday 9 August 2011
The recent interview with Professor Simon Wessely that appeared in the UK newspaper The Times (see yesterday's news article) has prompted letters of complaint.
Substantial parts of Stefanie Marsh's piece with Professor Simon Wessely ("Doctor’s hate mail is sent by the people he tried to cure", The Times, 6 August 2011 -- ME Association link) 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 thatall 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.
The above originally appeared on the Co-Cure mailing list here.
You do the reputation of your paper few favours by printing such one sided journalism as was done by Stephanie Marsh in Saturday's edition of the Times (6th August).
The article contained numerous assertions which were supposed to make us feel sorry for the poor Professor and serve to make people with ME appear unreasonable at best. Such drivel only feeds into the dismissive attitudes of healthcare professionals and hostility, disbelief and ridicule that pwME (people with ME) have to face daily.
Where is your journalistic integrity? When are you to balance what appears to be only Prof Wessely's view with that of those who have published extensively that he is and, always has been, misguided about ME.
Prof Wessely confuses "chronic fatigue" with the neurological disorder ME. He does not appear able to tell the difference. Chronic fatigue is a symptom of more than 10,000 medical disorders. The trial that he claims evidence for success in 1/3rd of patients is misleading as it was conducted on patients whose only entry criteria was "fatigue". Fatigue is not the main symptom of ME. It is overwhelming post exertional neuro-immune malaise and exhaustion that leaves patients unable to function or care for themselves. This is not being tired or being fatigued. In its more severe forms it leaves patients unable to wash, feed and bath themselves. No CBT/GET trials have ever been conducted on such severely affected patients as it would be inhumane to do so. One wonders what other medical condition claims success for a treatment when it would be ridiculous to use it on those who are sickest? Evidence for exacerbations of symptoms, severity and neuro immune and inflammation abounds in the medical literature that Prof Wessely chooses to ignore and refuses to engage with due to his pathological belief that if only we'd stop thinking we were ill and rose out of our beds to be more active we would get better. We have tried it. It makes us sicker, sometimes permanently so.
Prof Wessely fails to bring to your journalist's attention a Spanish trial (Nunez et al., 2011) that shows CBT and GET for ME results in patients being made sicker. The Belgians completed a national audit of their CFS clinics and found patients were less likely to be working and sicker after CBT/GET interventions. The FINE trial (a sister trial to the PACE trial) "improves fatigue in the short term compared with unconstrained GP treatment as usual, but the effect is small and not statistically significant at one year follow up." So, it is not scientifically correct or helpful to state people with ME get better with CBT/GET. This is weak science being spun. One has to wonder why your journalist didn't know this or take the time to take a critical look at what she was being told.
To promote Prof Wessely's view is to laugh in the face of 250,000 sick people in the UK who have no access to the latest medical tests, who are denied any form of medical care by the NHS - only advice on how to pace oneself, and who are often treated with disrespect, hostility and ignorance by NHS and Atos staff who are generally wholly ignorant of the devastating effect this disease can have.
Why did your journalist not speak to Dr Judy Mikovitis at the Whittemore Peterson Institute? Why not Dr Nigel Speight? A paediatrician with a career behind him defending children with this disease from authorities who think children can be exercised better. Professor Malcolm Hooper has written extensively about the abuses of Professor Wessely and his like minded colleagues. What about Prof Ian Lipkin who is currently leading an investigation into whether retroviruses are prevalent in pwME. Your journalist would have discovered that this science continues and it not over as Prof Wessely asserts. How about seeing what Prof Nancy Klimas in Miami has to say? She has been publishing papers regarding dysfunction in pwME's immune systems for more than two decades. Maybe your journalist could ask Prof Wessely why no NHS doctors or "CFS" services in the UK even bother to tests patients for these well know abnormalities. Or how about seeking our other leading ME researchers such as Prof Komaroff at Harvard? Or Professor Montoya at Stanford University. Why no interest in what these scientists have to say?
Until ME is separate from Prof Weseely's vague "fatigue" and until medical doctors make an effort and read the evidence for the biomedical basis for ME, patients will continue to be neglected and seen as nothing more than a medical joke. Your article, written by a journalist who exhibits no critical, scientific competences, yet again showed that you are happy for this status quo to continue and for pwME to be viewed as uncooperative and scientifically hostile or naive. Nothing could be further from the truth.
The above originally appeared on the Co-Cure mailing list here.
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