15 maart 2010


ME: Back to the Middle Ages with professor Simon Wessely - P.S.

This is just a P.S. to yesterday's piece in Nederlog (that is getting more and more English) about the interview with professor Simon Wessely in the New Scientist under the title "Mind over body?".

1. 648 comments

The article has 648 comments, nearly all very scathing, and deservedly so. There were also several readers of the New Scientist who ended their subscriptions, while a largish number of these comments were removed by the staff of the New Scientist, because the comments breached their terms of use.

Having ME and being normally, even when tired, a very to fairly fast reader, I read through most comments - and it is a choir of damnation, so to speak, and justifiedly so if you read the interview with some knowledge of ME or with some knowledge of real science.

Professor Wessely at some point - after 400 comments or so - himself posted a mail, and having downloaded the lot for fast reading, I here extract it in case you are too tired to find it, as it is in the download I did yesterday:

Response From Prof Wessely

Wed Mar 18 17:47:52 GMT 2009 by Simon Wessely

It is dispiriting to see personal abuse and the occasional untruth surfacing amongst other heartfelt responses to the interview between Clare Wilson and myself. Whilst I stand by the content of the interview, I must point out that the original choice of headline for the web version ("Mostly in the Mind") is not a phrase that I have ever used in my career. I can understand why that would provoke outrage.

In science progress comes from robust debate, as long as it is conducted with mutual respect, and centered around research as opposed to character. Unfortunately these are rules that are not always followed in this particular area. For example, in the website responses one supposed comment of mine is used to demonstrate my alleged contempt for sufferers. Several people claim that I ocne wrote about CFS/ME patients as follows: "The average doctor will see they are neurotic and will often be disgusted with them". If those were my words or views, I could understand the reaction. But they are not. It was a comment made in 1935, that I quoted in inverted commas in full (the quote concludes "many of them suffer the tortures of the damned) in a paper I wrote in 1990 in which I suggested that not a lot has changed since then, and that many contemporary patients with CFS still get a raw deal from some doctors. The full paper is called "What is wrong with the patient who feels tired, weak and toxic" and was in the New England Journal of Medicine in 1935.

Many posters cite studies suggesting that cognitive behaviour therapy (CBT) and graded exercise is ineffective against CFS/ME, and makes many people worse. But far more studies have shown the opposite - that both can help patients. This is confirmed by systematic reviews, meta analyses and Cochrane reviews, generally accepted as the best way of assessing the quality of research evidence in every other sphere of medicine.

Since publication of the interview I have received a stream of e-mails to my own account. One or two have been abusive. But most have not. Some describe their own experiences, others are complimentary. It is a pity that these correspondents did not post their responses on the website. But if you look at how dissent is greeted, it is understandable.

Which brings me to my final point. Many of the web responses make a plea for more "real" scientists to address the problem of CFS, by which they mean those who are not psychiatrists or psychologists. They may be surprised to learn that I fell the same. So why are those in the basic or laboratory sciences so reluctant to enter this area, as is undoubtedly the case?

One day after the publication of the NS interview with myself, Mr Justice Simon handed down his judgement in the judical review of the NICE Guidelines on CFS/ME (see http://www.afme.org.uk/res/img/resources/ApprovedJudgementNice.pdf). The Nice Guidelines concluded that the treatments with the best evidence of effectiveness for the treatment of CFS are at present CBT and graded exercise. Two patients had challenged the guidelines in court, claiming they were flawed and that those who had created them were biased. Mr Justice Simon unequivocally rejected these claims, adding

"unfounded as they were, the allegations were damaging to those against who they were made, and were such as may cause any health professional to hesitate before they involve themselves in this area of medicine. A perception that this is an area of medicine where contrary views are not to voiced, and where scientific inquiry is to be limited, is damaging to science and harmful to patients"

As usual, professor Wessely twists things around. I will not comment on his twists and misrepresentations here, except the first one in the first line, and by implication the concluding part of Wessely's post, where he cite a judge. Here is the first sentence:

It is dispiriting to see personal abuse and the occasional untruth surfacing amongst other heartfelt responses to the interview between Clare Wilson and myself.

Well... I am ill since 32 years; I am a psychologist, a philosopher and a logician; professor Wessely has been slandering, defamining, insulting and denigrating me and the likes of me with ME for more than 2 decades with claims that I feel ill because I am not sane; real scientists have uncovered a whole systematic tissue of untruths, misrepresentations and systematic ommissions in professor Wessely's writings - and he complains about "personal abuse"?!

Check out my ME: Documentation and in particular Criona Wilson's site Sophia and ME, about how her daughter was maltreated, tortured and driven to death because of professor Wessely's stance and standing on ME, and check out professor Malcolm Hooper's Magical Medicine for many excellent arguments to the effect that the "science" of professor Wessely is pseudo-science and that the morality of his sayings and doings and recommendations amount to sadism disguised as psychiatry or psychotherapy. (*)

Anyway... personally I am glad the New Scientist did the interview with him and published it, though many felt offended by Wessely's sayings, and rightly so. But let the man be heard in public, so that he can be contradicted and refuted - and it is not the editor's fault that Wessely's opinions are so clearly irrational, unscientific and - in so far as this psychologist can see - malevolent and hypocritical, nor is it their fault that he is a professor with some (remaining) standing in the British medical world.

Here is a final example of Wessely's ways with words and facts in the New Scientist interview:

2. There is no ME/CFS in France, professor Wessely says

After having insisted for 20 years that his kind of definitions are correct, and those of others aren't, that ME does not exist and that CFS is all in the mind, professor Wessely made a dicovery:

So do you think these syndrome labels are arbitrary?

Each country has different syndromes. They don't have CFS in France; they have a strange one, spasmophilia, where a person has unexplained convulsions.

As to "spasmophilia", Answers.com produces:

(medicine) A morbid tendency to convulsions, and to tonic spasms, such as those observed in tetany, infantile spasms, or spasmus nutans.

How this might be related to ME/CFS professor Wessely does not say, though as usual his suggestion is that this is yet another "dysfunctional belief system" that should be submitted to hefty doses of Cognitive Behavorial Therapy.

Anyway... there is a French organisation for ME/CFS; it can be found on the web; what they say is quite sensible, but it is French, that professor Wessely quite possibly can't read properly, and if he does, he might have found paragraphs like this, that go precisely the other way of his own kind of pseudo-scientific nonsense:

La plupart des malades errent de médecins en spécialistes pendant plusieurs mois ou années avant d’obtenir le bon diagnostic. En outre, on leur laisse souvent sous-entendre qu’il s’agit d’un problème psychologique, ce qui est particulièrement frustrant car la fatigue et les symptômes sont bien réels et surviennent alors que la personne était en parfaite santé.

De plus, la multiplication des examens et les différentes hypothèses émises par les médecins (cancers, dépression…) sont particulièrement éprouvants.

Une fois le diagnostic obtenu, l’absence de traitements vraiment satisfaisants, la chronicité de la maladie, la limitation des activités physiques et le retentissement sur la vie quotidienne sont autant de poids difficiles à porter. Les sentiments d’isolement, d’incompréhension et de détresse qui en résultent sont souvent sources de dépression. Il peut donc être
important de faire appel au soutien d’un psychologue. Ce dernier peut également aider le malade à faire face au regard des autres qui mettent souvent en doute la réalité de la maladie, et à maintenir l’image de soi qui peut-être altérée du fait de la faiblesse physique.

That is: The French recommend talking to a psychologist (psychotherapist, psychiatrist) in order to get help living with a condition that is falsely described as being not physical.

My point here is that this example well illustrates professor Wessely's levels of rationality and morality: He simply lies and/or makes things up when he is interviewed by the New Scientist (and others).

P.S. And lying and distorting are two of Wessely's techniques: Anybody who consults the net with minimal French will find there is ME and CFS in France; there are patients' organsations; and indeed it also seems that in France diseases or terms like fibro-myalgia, chronic fatigue syndrome, myalgic encephaloyelits, and sleep disorders (where spasmophilia may fit) are used a bit differently than in the English speaking world.

What I find quite peculiar about professor Wessely is the brazenness, the impertinence, with which he publicly says "the thing that is not" - and the only ways I can explain this, psychologically speaking, are (i) that it must give him a kick to do so and (ii) that he believes a man in his position is effectively beyond retribution, both from patients with ME (other than some "hate mail") and also from his medical colleagues and from the legal authorities, and that (iii) probably receiving "hate mail" gives him also satisfaction of various kinds.

However... the 648 comments in the New Scientist are in various ways interesting, and it is noteworthy that Wessely in his quoted "Reply" in no way deals with the many rational rebuttals and refutations of his pseudo-science by real medical and/or biocheical scientists, as e.g. summarized in my ME: Documentation and written out by professor Hooper in Magical Medicine. This is another reason why professor Wessely is neither rational nor honest nor behaving, thinking or talking like a real scientist.

P.P.S. Related by serendipity and my own interests (I have not been able to cultivate for the last 32 years, thanks to professor Wessely's ways, and those of his ik):

In the same New Scientist there is a nice interview with professor Roger Penrose, the mathematician, most of whose books I've read, and who still is going strong aged 80. Actually, I again have a - smallish - problem with the text of the New Scientist in his case, that tells about his response to his book playing (a small) part in a recent film:

He is evidently disappointed by the treatment as, just for a moment, his bright, enthusiastic demeanour dims slightly. "I thought she would have at least opened the book then closed it rapidly," he says. "But she didn't even get that far." There's a good reason for that: having a look inside the book might have derailed the film. Road To Reality clocks in at more than 1000 pages and is replete with intricate diagrams and terrifying equations. Its contents are pretty much indecipherable to almost everyone on the planet.

In fact - and yes: it is true I like mathematics - comparatively there is little mathematics in the book, and if you are like me, that is neither a pure mathematician nor a physicist, but with some mathematical knowledge (**), the mathematics and the diagrams in "Road To Reality" are quite helpful and also well explained.

Penrose is a real scientist, and worth millions of Wesselys - and then I am just speaking intellectually.

(*) I have no doubt that professor Wessely also - as he suggests in the mail I quoted, but without giving any decent evidence, as is usual for him - has a handpicked collection of patients (though he - who often says one thing in one interview or publication, and the opposite in another - also has claimed several times not to be involved in ME research and not to treat patients anymore "thank God!") who believe he is a great guy, and may even be willing to say so anonymously.

(**) Actually, most of the required mathematics (and a lot else) may be found in the excellent "A Comprehensive Textbook of Classical Mathematics", by H.B. Griffith and P.J. Hilton. There is a fine paperback of it published by Springer, that may be still available if only secondhand. The original was published in 1970. (If it is not yet a classic, it deserves to be one.)

Maarten Maartensz

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