ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Letter From ME/CFS Australia (SA) Inc To The Queen Mary University Of London
Tuesday 5 April 2016
From ME/CFS Australia (SA) Inc (via mail):
30 March, 2016
Re: Call for release of PACE trial data and independent analysis of data
We are writing as an organisation representing and supporting South Australian patients with ME/CFS, to express our concern about Queen Mary University of London’s (QMUL) refusal to comply with the UK Information Commissioner’s order to release the PACE trial anonymised raw data.
As QMUL is seeking the “advice of patients” on the matter, we are writing to convey our view to you. We support the request of an 11,000-signature petition hosted by the ME patient-advocacy organisation, ME Action Network, which asked “the study authors… to give independent researchers full access to the raw data”. 1
Currently, much of the information available to Australian medical practitioners is based on the PACE trial, (in particular, the Royal Australian College of General Practitioners’ website). However, eminent scientists have identified serious flaws in the PACE trial data analyses, putting the authors’ claims of patient recovery in serious doubt. 2
Contrary to the PACE trial authors' claims, GET can be extremely harmful to people with ME/CFS. In the UK's ME Association's 2012 patient survey, 74% of the 233 people who tried GET report that their condition worsened. 3 This anecdotal evidence is supported by studies reporting abnormal physiological responses to exercise in people with ME/CFS. 4
PACE-style GET and CBT are based on the underlying rationale that ME/CFS is the result of activity avoidance and deconditioning. This view is at odds with the Institute of Medicine’s (IOM) determination that “ME/CFS is a serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients”. 5 It is also at odds with the findings of eminent Australian researchers on the bio-medical basis of ME/CFS (Staines, Marshall-Gradnisik). 6
Given these concerns with the trial, and in the interest of open and transparent science, we request that QMUL comply with the Information Commissioner’s request to release the PACE trial data to independent researchers for reanalysis.
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