We wanted to be clear about our communications with NIH since there has been some conflicting information. The founders of #MEAction have never met with Dr Collins, Dr Koroshetz, Dr Nath, or anyone else on the intramural study. We have requested several times to meet with Dr Koroshetz and Dr Nath so that we could share the
In essence, the NIH is posting an open call for research scientists with proposals that may fall under the purview of the original grant for the NIH’s intramural ME/CFS study.
Recommendations submitted by advocates to NINDS to proactively contribute to a strong federal research program and to encourage collaboration between NIH and our community.
NINDS Director confirms PEM and CCC required for NIH post-infectious ME/CFS study.
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).
Talk by James Coyne in February Professor James Coyne of the University of Pennsylvania will be giving a talk entitled “The scandal of the £5 million UK PACE trial for ME: what can be done?” to two separate audiences in Belfast, Northern Ireland, in February. One talk is directed specifically at professionals, including Members of
Calling all British M.E. sufferers & allies, Inspired by our American friends and the progress that has been made over in the States with government funding and new research projects, we think it’s time for patients to put the pressure on the UK parliament. We are asking for an increase in budget to fund bio-medical research as well as the formation of a work group to represent the issues facing our community in government.
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!
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”,
