Category: All News

Catalan: Fibro, CFS and MCS patients face new restrictions on medical care

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

Read More »

Swedish psychiatrist on how he came to view M.E. as a physical disorder

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

Read More »

Government orders release of PACE trial data

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

Read More »

Prof. Jonathan Edwards: PACE trial is "valueless"

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

Read More »

NIH Funding for ME/CFS extramural research will increase

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

Read More »

PACE Trial Controversy Grows

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

Read More »

Letter to Burwell and Collins Demands Funding Equality

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”

Read More »

Canary in a Coal Mine at Good Pitch New York

Canary in a Coal Mine at Good Pitch New York Dear friends, family and colleagues, This Tuesday, Canary – a documentary film about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome – was one of seven film teams to present at Good Pitch New York, a gathering of foundations, NGOs, campaigners, philanthropists, policymakers, brands, technology, government, and media to forge

Read More »

David Tuller Tears Apart PACE Trial

Health scientist and New York Times published journalist David Tuller today launched a damning critique upon the UK’s £5 million PACE trial in an article published on the popular Virology Blog. The PACE trial was an open-label study of graded exercise therapy and cognitive behavioural therapy for chronic fatigue syndrome that used subjective measures as

Read More »

Canary Live at Good Pitch New York

Canary in a Coal Mine will be one of seven films to take the stage at BRITDOC‘s Good Pitch New York on Tuesday, October 20th. It’s a unique, live event that leverages a diverse audience to help build movements and campaigns around social issue films. Good Pitch brings filmmakers together with foundations, NGOs, campaigners, philanthropists, policymakers, brands, technology, government, and media

Read More »
Scroll to Top