Eigenlijk besteed ik het liefst nauwelijks tot geen aandacht aan
uitlatingen van "vermoeidheidsdeskundigen", zoals Simon Wessely.
Elke keer dat de man aandacht krijgt, is namelijk één keer te veel
Maar soms maak ik graag een uitzondering op die regel....
Naar aanleiding van een recent interview van de New Scientist met Wessely
getiteld "Kun je jezelf ziek denken?",
plaatsen talloze mensen een reaktie op de website van de New Scientist.
De man reageerde uiteraard zelf ook (zie onderaan),
teneinde zijn imago als zelfverklaard "expert" te bevestigen.
Onderstaande reaktie van de Charles Shepherd (ME Association) biedt hoop...
Als U alle internet-reakties op het stuitende interview wilt bekijken:
Anyone Out There Actually Read Any Research Papers?
Thu Mar 12 22:27:34 GMT 2009 by Dr Charles Shepherd
As a doctor with no mental health problems
who developed ME as a result of a chickenpox encephalitis
I can fully understand why people with this illness feel so angry
when it is so flippantly described as
'almost all in the mind' or 'How people can think themselves sick'.
Having an inaccurate psychosomatic label attached to an illness
creates all kinds of practical problems for patients
- inappropriate or harmful treatments and refusal of benefits in particular - ]
as well as discouraging biomedical research into the underlying cause.
Fortunately, there are clinicians and researchers
who believe that ME/CFS has a solid physical basis involving infection, immunology, endocrinology and neurology.
As a result, the Medical Research Council has recently set up a new Expert Group to look at these areas of causation.
When it comes to treatment,
The ME Association has just completed analysing results
from the largest ever survey of patient opinion ever carried out (over 4,000 respondents).
Not surprisingly, these results clearly show that over 50% report that
behavioural treatments such as cognitive behaviour therapy (CBT) and graded exercise therapy (GET)
are either ineffective or made their condition worse.
So please can the New Scientist return to the more objective position on ME/CFS that it took in 2006 (1)
when it reported on neurological abnormalities in the spinal cord (ie dorsal root ganglionitis) in a 32 year old woman
who had died as a result of having ME and in 2005 (2)
when it reported on abnormalities in gene expression - neither of which could be possibly caused by abnormal thought processes.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
1 Hooper R. First official UK death from chronic fatigue syndrome. New Scientist, 16 June 2006
2 Hoper R. Chronic fatigue is not all in the mind. New Scientist, 21 July 2005
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 once 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.
[link werkt niet, FT]
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".