November 20th Update: Thanks to all of our members who voted in this poll. A significant minority of our members voted against #MEAction signing the letter, so we have decided to not formally sign the letter. We are still working out what policies make sense and really appreciate all of our members’ flexibility and openness
Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) Since then, other researchers and journalists have
Virology Blog today published an open letter from six leading scientists calling on The Lancet to seek an independent re-analysis of data from the controversial PACE trial. The Lancet published the first PACE trial paper in 2011, which examined psychological and exercise therapies aimed at getting chronic fatigue syndrome patients more active and was based
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
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
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
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
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.
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
