Editor’s note: This is a clarification on the NIH’s earlier, accidental release of the intramural study protocol, which listed the Reeves definition as the sole definition of the new study. Robert and Courtney’s summary of their conversation has been confirmed by multiple sources within the patient community, including #MEAction. Robert and I had a well-timed
Thank you to Jennifer Spotila for giving us permission to reprint her article and for all of her great investigative work. The original post can be found on her blog at http://www.occupycfs.com/. NIH: Who Reviewed Grants in 2015 In order to get NIH funding, a researcher has to succeed in several levels of application review. A persistent controversy
Solve ME/CFS Initiative Grades HHS on CFSAC Response The Solve ME/CFS Initiative has created a report card for HHS’ response to the recommendations made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) after its August meeting. The grades the organization gave on the HHS response to the 13 CFSAC recommendations range from A- (one) to F (four).
NIH has now removed its Medline/ National Library of Medicine (NLM) article promoting CBT and GET for ME/CFS treatment. It was taken down just DAYS after we began filing complaints. I received a response from NLM explaining that they “removed the article since it did not provide a balanced view on the topic.” Although the
Medline Plus, NIH’s web site for patients, just published an article from health news distributor Healthday, based on the recent, discredited U.K. PACE study. The new article states that “cognitive behavioral therapy and graded exercise therapy are among the best available treatments for extended relief” of ME/CFS. Fortunately, if you want to file a complaint about this article, it’s super easy.
USA’s CFS Advisory Committee wants bigger research, aimed at finding diagnostic tests, using Canadian Consensus Criteria and private-public partnerships to find drug treatments. It asks for $250 million annually, estimating ME/CFS costs the US up to $24 billion.