PACE trial's 'sister' study overlooked
November 10, 2015
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In his Virology blog, David Tuller examines results of ‘sister’ to the PACE trial
Category: Featured news
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
NIH announces new clinical study and move to NINDS
October 29, 2015
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Editor’s note – this is an emerging news story. Edits will continue to be made to this page as we receive more details. The National Institutes of Health (NIH) announced today that it will undertake a new clinical study and “reinvigorate” the long-standing trans-NIH working group to further ME/CFS research, an effort to be led by the
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
Investigative Journalist Exposes PACE Trial
October 24, 2015
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Journalist and public health expert David Tuller completed yesterday the publication of his highly critical investigation into the UK’s £5 million PACE trial, on the well known Virology Blog (see Parts 1 and 2, Part 3 and Part 4). The PACE trial was a non-blind study of cognitive behaviour therapy (CBT) and graded exercise therapy (GET)
Letter to Burwell and Collins Demands Funding Equality
October 24, 2015
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Uniting the ME/CFS community is not easy, but it has never been more important than right now. One thing we all agree on is the urgent need for vastly increased funding at the National Institutes of Health, our nation’s scientific research machine. When two federally funded reports told NIH that there was an “urgent need”