(Long tweet) The original (much longer) letter sent to IoS by CoM/Hooper/Weir-was supposed to be today on IoS site
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PERMISSION TO REPOST

Here is the original letter sent to the Independent on Sunday in answer to slurs made about the CoM, Prof Hooper and Willy Weir in an earlier piece. The IoS had promised to print the full version online with the shortened 140 word version in the paper edition. As yet they have not produced the full copy online. (140 word version published online and in print on Sunday 13th Jan 2013 can be found here: http://www.independent.co.uk/voices/letters/ios-letters-emails--online-postings-13-january-2013-8449260.html )

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

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