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ME/CFS?/CFIDS Scandal UK
Tuesday, 30 March 2004
Myalgic Encephalomyelitis Pace trials (what use?)
Peter White and Simon Wessely are the psychiatrists running the PACE trial. Wessely's name is on the PACE protocols document sitting on my desk. Wessely is in fact directing it. No doubt and no debate.

I give you verbatim:
PACE TRIAL IDENTIFIER ---------------------
"4.1 What are the arrangements for day to day management of the trial? The trial will be run by the trial co-ordinator who will be based at Barts and the London, with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU."
Jane London UK

-------------------------------------------------------

Alison Hunter Memorial Foundation

Re UK Medical Research Council funded PACE Trials White, Sharpe, Chalder et al

The American Association for Chronic Fatigue Syndrome Newletter August 2003 (Workshop summary by Editor Daniel Clauw, MD, from notes by Eleanor Hanna) Scientific Workshop,sponsored by the NIH Office of Research on Women's Health June 12-13 2003, Bethesda, Maryland

Presentation of Peter White,MD CNS and ANS Responses to Exercise in Patients with CFS Excerpt:

" He( Dr White) focused on the fact that CFS patients view exercise as being more exhausting than controls, and that this could be evidence fora more widespread abnormality in enteroception in CFS. Re: appropriate models, Dr White explained that the cognitive behavioural model of CFS posits that the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and avoidant coping. Beliefs associated with a poor outcome in CFS include that exercise is dangerous or damaging, that the cause of CFS is a virus, and that CFS is a physical illness."

The UK multi centre studies of PACE by using broadly defined patient cohorts will have serious and long-term implications worldwide for the management of people with ME/CFS.

What precise measures will be used to assess benefit from these trials? For instance ? improved swallowing, less abdominal pain and distension, less vomiting, improved gastric emptying, reduced diarrhoea, weight gain, able to cease nasogastric tube feeding, or headache eased, rolling over in bed unaided etc.

Will such patients be classified as somatoform disorder and therefore excluded? Will the beliefs of the researchers be strongly associated with / reliably predict the trial outcomes?
"Truth is the child of time, not of authority" - Bertold Brecht, Life of Gallileo

Christine Hunter
chunter@ahmf.inspired.net.au
Alison Hunter Memorial Foundation

Posted by peter200015 at 2:03 PM EAST
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