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”
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
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
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
SMCI Meets with Senate Appropriations Staff The Solve ME/CFS Initiative has posted an
Neurology Now on CFS Neurology Now recently posted an article targeted at neurologists with the headline “Beyond Tired: Is chronic fatigue syndrome a real medical condition? Yes, according to a report from the Institute of Medicine, which urges physicians to treat it accordingly.” The piece is primarily focused on the IOM report and its suggested
UK CMRC conference to be livestreamed on 13 and 14 October Parts of this year’s UK CFS/ME Research Collaborative (CMRC) international conference, which will be held in Newcastle on Tuesday the 13th and Wednesday the 14th of October, will be livestreamed by the charity Action for ME. The conference has a full two-day agenda of
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
The Tragic Neglect of Chronic Fatigue Syndrome With a surprisingly broad-ranging and detail-rich article by Olga Khazan entitled “The Tragic Neglect of Chronic Fatigue Syndrome,” The Atlantic became the latest national publication to inform its readers about the severity of disease impact, dearth of medical understanding and treatment, lack of public awareness, and abysmally low
CFSAC- Let’s Take Action ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off. But scrambling is not something ME advocates can, or should do. Health- and resource-
