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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

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Letter: Ask HHS to Investigate PACE

Dear #MEAction users, Please find below a letter to HHS (CDC and AHRQ) calling on them to investigate the PACE trial and take whatever steps are needed to protect patients. This includes revising the AHRQ Evidence Review and CDC clinical guidelines to remove recommendations such as cognitive behavior therapy (CBT) and graded exercise (GET) that are based on

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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

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Sign this letter to the Danish Prime Minister for Karina Hansen

Editor’s note: Michael Evison of ME Alliance has written this letter to the Danish prime minister about Karina Hansen’s case and is asking for signatures of support from all around the world by Midnight October 29th (GMT).  [button_color url=”http://sallyjustme.blogspot.se/2015/10/karina-hansen-please-sign.html” content=”Sign the letter” target=””]   Dear Prime Minister Lars Lokke Rasmussen, We the undersigned wish to appeal to you,

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Investigative Journalist Exposes PACE Trial

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)

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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

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Push to change ME/CFS NICE guideline

Minutes just released for the 15 July 2015 meeting of the cross-charity Forward-ME group record a discussion with Dr Martin McShane of NHS England on getting him to recommend that the NICE guideline on ME/CFS should be revised. The guideline, which should be based on the best available scientific evidence, and which is followed by

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This Video Could Save your Life

The Use of Patient Blogs as a Care Resource Thanks to Greg Crowhurst for his incredibly kind review of my presentation on his blog and for giving permission for me to share his review on the #MEAction site: “My heart goes out to anyone newly diagnosed with “ME”, Myalgic Encephalomyelitis, for you are instantly thrown

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NIH awards $766K to Lipkin and Hornig

The US National Institutes of Health (NIH) has awarded a total of $1.3 million for ME research to three teams led by Drs. Ian Lipkin and Mady Hornig, Nancy Klimas and Maureen Hanson, respectively. In an unexpected move, the NIH gave $766,000 to Drs. Ian Lipkin and Mady Hornig and their team at the Center

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