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)
Maka a video about ME and make a fuss! (Australia)
SMCI Meets with Senate Appropriations Staff The Solve ME/CFS Initiative has posted an
In the US? Find your state and sign the petition. Not in the US? Sign the global solidarity petition. Share your story, tell congress why we need Mylagic Encephalomyelitis Funding Equality.
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
Bob and Courtney Miller are writing a letter to Francis Collins, Director of the National Institutes of Health (NIH) and Sylvia Burwell, US Secretary of Health asking that the NIH: Assign ME/CFS to a strong, well-funded Institute like NINDS, to enable strategic planning and structural accountability. Fund a mix of intramural and extramural research (as NIH does for
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-
MedPage Today Focuses on Need for Recognition of ME/CFS and Research Funding MedPage Today, a news site for medical workers, published an article about ME/CFS that mentions the #MEAction campaign to increase federal research funding. The article gathered quotes from top ME/CFS researchers Leonard Jason and Lucinda Bateman, and it summarized the findings of the recent
AIDS Research took a death sentence and made it a manageable disease. ME-CFS needs the same level of effort to solve this worse disease that often is lifelong. Request $250M per year for ME-CFS R&D, so NIH can stop discrimination against ME-CFS and related diseases.
