Help us build a powerful, participatory voice for change in Washington #MEAction is thrilled to announce that we are coming together with over twenty organizations, bloggers, and independent advocates to form a US Action Working Group. We aim to create a powerful, participatory voice for change in Congress, across our federal agencies, and in medicine. Read the
Basic research and drug trials under discussion at the NIH In October, the National Institutes of Health (NIH) announced it was stepping up its commitment to ME/CFS and would be expanding its intramural and extramural research programs. Francis Collins, director of the NIH, told Science that his colleagues were “determined to move pretty fast on this.”
The NIH is changing how it decides to fund research. Will it benefit ME/CFS?
Have you always wanted to email your Congressmen/ women about ME/CFS but don’t know what to say? Or maybe you’re too sick to draft a letter? We’ve made it easy! Just go to the listed website and copy and paste the sample letter!
In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was restored to the full $5.4 million. The omnibus budget bill is expected to pass both houses on Friday. CDC funding for ME/CFS had previously been cut to $0 in the proposed 2016 budget. [pullquote align=”right” cite=”” link=”” color=”” class=””
Professor James Coyne’s request for the dataset used for a paper about the PACE trial in the journal PLOS ONE was rejected on Friday as “vexatious”. King’s College London (KCL), acting for the PACE authors, wrote to Professor Coyne that they considered that there was “a lack of value or serious purpose to [his] request”,
Professor James Coyne yesterday posted online his letter to PLOS One complaining about the PACE authors’ failure to provide him with data from a paper published in the journal. Coyne’s letter was premature because he had been misinformed that he would receive a response within 20 days rather than 20 working days. However, it indicated
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.
Background The Ministry of Health (MoH) is seeking feedback on its update to the New Zealand Heath Strategy. Let’s ensure the ME/CFS community is heard – express your views on the forum now! https://futuredirection.health.govt.nz/join-the-discussion/people-powered/are-there-health-services-geared-your-needs-and-lifestyle What you can do The MoH is asking: “are there health services geared towards your needs and lifestyle?”. This is a
James Coyne gives a public talk on PACE Trial In a public talk in Edinburgh on Monday, psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media. The authors of
