From Letters Page, The Independent on Sunday, 13 January 2013.
Scientific understanding always depends upon sound evidence. According to Sir Paul Nurse FRS: “The John Maddox Prize is an exciting new initiative to recognise bold scientists who battle to ensure that sense, reason and evidence base play a role in the most contentious debates.” For scientific understanding to prevail, the extensive biomedical evidence base of ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome] must now be recognised by all researchers in the field.
The idea that ME/CFS is due to a dysfunctional psyche is a hypothesis without an evidence base. The Maddox Prize was thereby awarded to the defender of a hypothesis with no evidence base rather than to someone who was upholding true scientific inquiry. Personal attacks against Professor Sir Simon Wessely do not advance the cause, but it is scientifically legitimate to direct criticism at the hypothesis both he and Professor White continue to espouse.
The Countess of Mar
Professor Malcolm Hooper
Dr William Weir
House of Lords, London SW1
If one looks, for example, at some points in the submission of St Bartholomew’s Hospital Chronic Fatigue Services (headed by Peter White, mentioned in the letter) on the draft NICE guidelines for “CFS/ME” https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0709A&L=CO-CURE&P=R2063&I=-3&d=No+Match%3BMatch%3BMatches , one can see that the service is looking for various sorts of disability supports not to be given to patients. The submission by the Chronic Fatigue Research Unit at King’s College, London where Simon Wessely is based, took a similar approach. Such an approach can also extend to disability payments. So these positions are more like those of right wing politicians who feel people can pull themselves up by their bootstraps from any difficult situation they find themselves in and various supports could get in the way.
The problem is that many believe they have hyped the efficacy of the therapies as well as downplayed any possible risks or adverse reactions some have experienced from trying rehabilitative approaches.
For these and other reasons, it is not that surprising that people may get more passionate about what they say than other academics and researchers.
(the first part of this repeats the letter above but I thought I would include it for completeness)
13th January 2013
Latest Independent on Sunday correspondence
On Sunday 25th November the UK newspaper, the Independent on Sunday, published an article,
“ME: bitterest row yet in a long saga” (1) which led to the publication of a letter signed by 27 signatories, which was published on the 2nd December (2).
Today, in response to this, the following letter has been published in the Independent on Sunday, in both the hard copy and on-line:
http://www.independent.co.uk/voices/letters/ios-letters-emails–online-postings-13-january-2013-8449260.html
Scientific understanding always depends upon sound evidence. According to Sir Paul Nurse FRS: “The John Maddox Prize is an exciting new initiative to recognise bold scientists who battle to ensure that sense, reason and evidence base play a role in the most contentious debates.” For scientific understanding to prevail, the extensive biomedical evidence base of ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome] must now be recognised by all researchers in the field.
The idea that ME/CFS is due to a dysfunctional psyche is a hypothesis without an evidence base. The Maddox Prize was thereby awarded to the defender of a hypothesis with no evidence base rather than to someone who was upholding true scientific inquiry. Personal attacks against Professor Sir Simon Wessely do not advance the cause, but it is scientifically legitimate to direct criticism at the hypothesis both he and Professor White continue to espouse.
The Countess of Mar
Professor Malcolm Hooper
Dr William Weir
House of Lords, London SW1
…………………….
A longer version, too long for the printed edition, is expected to appear on the IoS website:
Sir,
Professor Peter White, on behalf of himself and his 26 co-signatories, has apologized to the three of us following the publication of their letter on 2 December 2012. He made it clear that he did not intend to imply that we were harassing Professor (now Sir) Simon Wessely. We were not harassing him. None of us believes that harassment is a means of advancing scientific debate, and certainly not in promoting a greater understanding of the causes of ME/CFS.
In the IoS article of 25 November 2012 we were criticizing the award of the Maddox Prize to Professor Wessely because it is axiomatic that the progress of scientific understanding depends upon sound evidence. Sir Paul Nurse, President of the Royal Society, has said: “The John Maddox Prize is an exciting new initiative to recognize bold scientists who battle to ensure that sense, reason and evidence base play a role in the most contentious debates.”
We are in complete agreement with Sir Paul. We would wish the scientific process to prevail, whereby the extensive peer reviewed biomedical evidence base on ME/CFS is acknowledged and used by all researchers in the field to advance the understanding of the disorder, and we have been calling for this for many years.
There can be no doubt that the cause of ME/CFS is a contentious issue and that there remain many unanswered questions. Both Professor White and Sir Simon Wessely have promoted an hypothesis that ME/CFS is due to an abnormal illness belief; that it is perpetuated by dysfunctional beliefs and coping behaviours, and that cognitive behavior therapy (CBT) and graded exercise therapy (GET) are effective treatments for the condition. In an attempt to prove this hypothesis Professor White, principal investigator, and colleagues, including Sir Simon, conducted what has become known as the PACE trial, published in February 2011 in The Lancet, at a cost of some £5m to the taxpayer. No data on recovery rates and positive outcomes have been released and a FOI request to Queen Mary University of London revealed that: “The requested data relating to recovery rates and positive outcomes do not exist. That is to say that such analyses have not been done and there is no intention to do so. The reason for this is that the analysis strategy has changed from the original protocol.”
There has been no attempt by Professor White to correct the misapprehension in respected journals as well as the popular press that the PACE trial demonstrated recovery rates of between 30% and 40%. The release of all the data relating to the PACE trial would be the most telling indication of the efficacy of CBT and GET and would contribute very effectively to the evidence base that precise scientific enquiry demands.
In our view, the idea that ME/CFS owes its origins to a dysfunctional psyche is an hypothesis that lacks any scientific evidence base. We are therefore at a loss to understand why the Maddox Prize was awarded to the defender of that hypothesis rather than to someone who was upholding the spirit of true scientific enquiry.
Our main interest is in advancing the scientific understanding of the cause of a frequently devastating and debilitating condition which blights the lives of many thousands of people. We do not believe that personal attacks directed against Professor Sir Simon Wessely will advance the cause, but reserve the right to direct criticism at the hypothesis both he and Professor White continue to espouse. We believe that a proper scientific understanding of the cause(s) of ME/CFS will emerge in the fullness of time.
The Countess of Mar
Professor Malcolm Hooper
Dr William Weir
House of Lords
London SW1
(1) http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html
(2) http://www.independent.co.uk/voices/letters/ios-letters-emails–online-postings-2-december-2012-8373777.html
Hi Guys
I am so grateful to The Countess of Mar, Professor Malcolm Hooper and Dr William Weir and I’m sure anyone reading this
who has ME/CFS or knows someone who not only suffers the
illness but all the associated frustrations that seem to emerge
from having this illness, are as grateful as I am that these
wonderful people step forward every time to voice the opinions
that we all must have.
It is beyond my comprehension that Simon Wessley, et al is honoured in the way he is/has been. Having said that, and I
have commented previously, that it is because he does what
The Establishment pays him to do. But there are ways to
expose him and I really think that is the only way to move all
this debate along.
I would be quite willing to challenge Simon Wessley to ‘prove’ that my illness is everything ‘he’ says it to be. I don’t know
how old he is but I’ve probably had ‘my ME’ as long as his age, or very near – having supposedly had it for about 43 years!
There is a way that could probably expose him and that is to get the documents at Kew released (as I said last week in my comment on his knighthood). But I’m sure The Countess of Mar, Professor Hooper, Dr Weir and probably many others have already tried but please keep trying. I, and probably many others, want to know what The Government is hiding.
Best wishes to you all.
Hey Francess, I was diagnosed with virally induced ME by Prof Behan in Glasgow a good number of years before Simon got involved in ME in London, Simon was – and is – well aware of Prof Behan’s work with ME but he told me quite candidly – and politely I should say – on a thread a while ago that he did not agree with Behan, so I personally am at a loss how to challenge a scientist who happily ignores biomedical evidence. And there is a growing mountain of evidence since my own diagnosis in 83/84. It is simply beyond comprehension that he remains happy to conflate unexplained chronic fatigue – which apparently he treats with success – with neuroimmune illness. No one benefits from this charade in the end.
The Wessely school does not have a hypothesis for ME. A hypothesis must be falsifiable. The beliefs of the Wessely school cannot be falsified and so cannot be a hypothesis. The Government and its various agencies have replaced scientific evidence with opinions not backed by scientific evidence.