Aust Senator questions government on lack of action on ME
November 16, 2015
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Australia’s Senator Ludlam asks Department of Health what they do for people with ME.
Category: All News
Scientists demand independent analysis of PACE trial
November 13, 2015
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Virology Blog today published an open letter from six leading scientists calling on The Lancet to seek an independent re-analysis of data from the controversial PACE trial. The Lancet published the first PACE trial paper in 2011, which examined psychological and exercise therapies aimed at getting chronic fatigue syndrome patients more active and was based
James Coyne tells PACE authors: Stop fighting data release
November 11, 2015
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Professor James Coyne today publicly urged the PACE trial authors and Queen Mary University of London to stop fighting the release of raw data from the study. He used his popular blog in a powerful call to those responsible for withholding the information from the £5 million, taxpayer-funded trial to “let the People’s data go”.
Close to collapse: new report highlights shocking lack of social care for people with M.E.
November 10, 2015
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[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]”I haven’t got the energy to spare to jump through hoops to get the help from social services that I am entitled to.”[/pullquote] This is the experience of just one of the 850 people with M.E.in the UK surveyed for Action for M.E.’s Close to collapse report, detailing the shocking
Catalan: Fibro, CFS and MCS patients face new restrictions on medical care
November 10, 2015
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Report from Catalan The Catalan Government Health Department’s new plan for Central Sensitivity Syndrome patients Liga SFC/SSC, September 2015 On July 1st, 2015, the Health Department of the Catalan Government published a document, “Central Sensitivity Syndromes: Fibromyalgia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivities”. This document was written by a group of so called “experts” appointed
Swedish psychiatrist on how he came to view M.E. as a physical disorder
November 9, 2015
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Prof. Carl-Gerhard Gottfries is a professor of psychiatry. In this video, he explains how he and his colleagues first approached the treatment of patients with fibromyalgia and ME from a psychiatric perspective, and later came to view these illnesses as “multi-organic disorders” involving the immune system. Gottfries became interested in ME in 1957, when a pandemic
Government orders release of PACE trial data
November 6, 2015
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The Information Commissioner’s Office (ICO) has ordered Queen Mary University of London to release anonymized PACE trial data to an unnamed complainant. Queen Mary has 28 days to appeal the decision. The report outlines the scope of the data requested, Queen Mary’s arguments for refusing to release the data and the Commissioner’s justification for siding with the patient requesting the
Prof. Jonathan Edwards: PACE trial is "valueless"
November 1, 2015
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OPINION PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is. The only possible mitigation of this flaw would be if: 1. There were no acceptable alternatives to a subjective primary
NIH Funding for ME/CFS extramural research will increase
October 29, 2015
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From Bob and Courtney Miller: We are excited to share news that the NIH has elevated its research approach to ME/CFS with important structural changes the patient community has been asking for. NIH announced today that ME/CFS will become housed in the National Institute for Neurological Diseases and Strokes, moving it out of the Office
PACE Trial Controversy Grows
October 28, 2015
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In wake of David Tuller’s investigation, PACE investigators publish follow up study Last week, journalist David Tuller published a four-part investigative piece on the 2011 PACE trial, a £5 million (US$8 million) non-blind study of cognitive behavioral therapy (CBT) and graded exercise (GET) as treatment for chronic fatigue syndrome. In his piece, Tuller quotes top