Sunday, December 2, 2012

Understanding Simon Wessely and his Paternalistic Counter-Enlightenment

Attention conservation notice: I will try to outline my impressions of what Simon Wessely's position on ME/CFS is – in order to understand the reason why his (and his peer's) practice is so insidious.

(Apologies for the amount of Wessely related content lately, but it seems that if there is nothing else ME/CFS-related to write about, one can always find a ME/CFS-quack to take apart.)

First to illustrate his position, some quotes from Simon Wessely's and Sharpe's work "Chronic Fatigue and Neurasthenia: A Review" (courtesy of a comment by ErnRoberts on the "noodlemaz" blog):
Our hypothesis is that fatigue syndromes are universal, but that culture is important in understanding the transition from symptoms to disability.

Where there is considerable concern around concepts such as immune dysfunction, viral persistence, and environmental toxicity (irrespective of the true prevalence of all of these factors), there may be a greater likelihood of symptom persistence and severe disability. …
Poor outcome in CFS is predicted by longer illness duration, more severe symptoms, older age, depression, and lack of social support, and also by a strong belief in physical causes.

Severely disabled patients attending specialist clinics have a particularly poor prognosis
… a reduction in the belief that activity is damaging is associated with recovery during rehabilitative therapy, suggesting that it may be a critical psychological target for effective rehabilitation …

“Patients’ beliefs about their illness and associated coping behaviour will be influenced by the information received from others.

A striking social aspect of CFS is the high level of activity of patient support and advocacy organizations, mainly over the Internet.

Studies from the United Kingdom have reported that patients who are members of a support group have a poorer outcome, despite similar illness duration and disability, and a poorer response to rehabilitation.

It is unknown whether this reflects self-selection into such groups or the effect of the group on patients’ beliefs, coping, and willingness to engage in rehabilitation.

Other factors include the experience of repeated questioning of the legitimacy of one’s illness by doctors and others, which probably serves to drive some patients to join advocacy organizations.

Perhaps unsurprisingly, in fibromyalgia, the acquisition of a disability pension is also associated with a worse prognosis. … 
Whatever the biological aspects of CFS, cognitive-behavioural models assume that the symptoms and disability are perpetuated, at least in part, by psychological, behavioural, and social factors.

Biological factors are assumed [Hear, hear! A true scientist who tries to falsify his theories!] to be either only partially responsible for the illness or largely reversible.
So I take it that Wessely believes that people with ME/CFS have a "false" believe that they have a bodily disease, and a "false" perception of "normal" bodily sensations. Furthermore he believes it is this "false" believe that is the only thing wrong* (which can be shown to be wrong).

Now, it seems his believe is that this "false illness perception" is what actually cause patients to stay ill – the worse the "perception", the worse the prognosis of getting better.** (Here Simon Wessely seems to have the made classic correlation/causation error, and putting the cart before the horse – why he can't do simple 2-day exercise challenges, à la Dr. Snell, which would falsify his theory, that can remain anybody's guess.)

Alas, it is not mainly this wrong premise about "false illness believes" that is primarily insidious, but the paternalistic practice that follows from this.
There is some controversy about whether giving patients a diagnosis of CFS is helpful or harmful.

There are those who feel that a diagnosis enables patients to both conceptualize their illness and communicate about it with others.

Others are concerned about the potentially harmful effect of a diagnosis, arguing that it medicalizes and pathologizes symptoms in a way that can exacerbate social and occupational disability.
The Management [sic] Plan

This should be explained [sic] to the patients as following from the formulation, focusing on illness perpetuating factors and consisting of elements aiming to

(a) relieve symptoms such as depression, pain, and sleep disturbance with agents such as antidepressants,

(b) assist the patients efforts at coping by stabilizing activity and retraining the body to function effectively (graded exercise, CBT), and

(c) assist the patients in managing the social and financial aspects of their illness and where possible remaining in or returning to employment (problem solving)
Patients seen in specialist settings in Western cultures with the label of CFS or its equivalents are often resistant to psychological labels and/or explanations.***
Simon Wessely does not seem to believe that an patient of his is accessible to rational dialogue, he even deems it harmful. Someone with a humanistic and enlightened perspective would talk to a patient, try to explain the disease model and get what I would call "rational buy-in" – instead, it seems Simon Wessely believes that ME/CFS patients need to be sucker-punched into a (disguised) mental illness diagnosis and a therapy they are not meant to understand (and could not give their informed consent to, obviously).

I feel that Simon Wessely believes it is wrong, wrong, wrong to tell the patient the truth – that must be the reason why there is such a disconnect between what says to the unwashed masses when he speaks to the public (and therefore to "his" patients) and what he tells to his peers.

The "Management [sic] Plan" seems to be one big fat lie, as the targets that are stated towards the patient ("relieve symptoms … with antidepressants", "assist … at coping" and "assist in managing the social and financial aspects of their illness") differ substantially from the "false illness believes" that are the root cause according to Simon Wessely.

And obviously selling a therapy to which people can not give informed consent – by the very rationale of the therapy – is usually something that does not jibe well with the medical authorities (or at least I assume so in any modern post-feudal nation). One more reason why Simon Wessely does good (at least good in his interest) to keep his intentions muddy and unclear to outsiders, and his practices effectively hidden from scrutiny.

Simon Wessely, an truly idealistic paragon of the Counter-Enlightenment – quick, someone make him a Baron or something for his fight against the unwashed masses!


* As to his claim that
“The bulk of evidence indicates that there are no proven pathologic or biochemical abnormalities of muscle or muscle metabolism, either at rest or with exercise, other than those associated with deconditioning”.
I refer you to the following lectures: Christopher Snell 2012, Alan Light 2011 and Alan Light 2007, all of which show pathological changes in a majority of tested ME/CFS patients during an exercise challenge – changes that can not be explained by false illness believes, deconditioning or sedentary behavior. But apparently a properly designed exercise challenge is rocket surgery and beyond the reach of even our very talented Simon Wessely.

** Especially the statements that "severely disabled patients attending specialist clinics have a particularly poor prognosis" and that "the acquisition of a disability pension is also associated with a worse prognosis" are truly awful statements, laying blame on specialists taking patients seriously and the approval of the disability pension. Anybody who has tried (in any country) to apply for such a pension knows that one is put under quite some scrutiny, and one has to be quite diseased to be approved (the very few fraudulent cases non-withstanding) – that those that passed such scrutiny have worse prognosis is apparently an unexpected surprise for Simon Wessely and prove in his cart-before-the-horse-world that the approval does the harm.

*** Could it just be, that patients might have good reason to reject the psycho-pathologization by Simon Wessely and his peers? And maybe even have rational cause to be angry at being psycho-pathologized in the face of a bodily disease (cf. Snell and Light)? I would even go so far and argue that if the practice of Simon Wessely does not make you angry, that you might be a bit lacking in your thinking department. What a perverted world, where those who praise Simon Wessely are seen as mature and intelligent.

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