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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Suite 506,
North Terrace House,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

ME/CFS Australia (SA) 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.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

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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):

 

ME/CFS Australia (SA) Inc
 

30 March, 2016

Professor Simon Gaskell
President and Principal
Queen Mary University London
Mile End Road
London E1 4NS
United Kingdom

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.

Yours sincerely,
Management Committee
ME/CFS Australia (SA) Inc

Cc
Rachel Cragg
Group Manager
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire SK9 5AF
United Kingdom

 

1 ME Action Network (2015). "Misleading PACE claims should be retracted".

2 Virology Blog (2016). "An open letter to The Lancet, again".

3 ME Association (2015). "Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS".

4 Snell C, Van Ness M, Strayer D & Stevens C (2015). "Exercise capacity and immune function in male and female patients with chronic Fatigue Syndrome (CFS)". In Vivo, 19(2), 387-390.
Bazelmans E, Bleijenberg G, Van der Meer JWM & Folgering H (2001). "Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity". Psychological Medicine, 31(1), 107-114.

5 Institute of Medicine (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an illness".

6 Marshall-Gradnisik S, Smith P, Nilius B, Staines DR (2015): "Examination of Single Nucleotide Polymorphism in Acetylcholine Receptors in Chronic Fatigue Syndrome Patients". Immunology and Immunogenetics Insights, 7:7-20.

 


 

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