The 2016 Annual General Meeting of the UK CFS/ME Research Collaborative (CMRC) will be livestreamed on Wednesday 27 April, from 2.45 pm to 3.30 pm British Summer Time. Viewers must preregister. The agenda of the AGM is as follows: Welcome and apologies Annual report 2014-15 Charter revisions/approval Plans for 2015-16 Membership of the Board Any other business
Dutch ME patients strongly disagree with the composition of the Dutch Health Council ME Committee and start petition “ME is geen SOLK” (ME is not MUPS). On March 29th 2016, the Dutch Health Council announced the names of the members of a newly formed Committee that has the important task of writing an advisory report on
Write to the University of New South Wales and ask them not to allow a trial to train health professionals in graded exercise therapy and cognitive behaviour therapy for chronic fatigue syndrome patients in Australia.
Two studies at the University of NSW are using the ‘potentially harmful’ 2002 Australian guidelines. It is time for Australia to adopt the International Consensus Criteria.
After responding negatively to most of CFSAC’s recommendations for the ME/CFS research program, the NIH has now revised many of their responses to better address CFSAC’s requests. Following the announcement of the NIH’s new ME/CFS research program, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) submitted formal recommendations to the agency about how the program should be structured. These recommendations
MEpedia is a crucial tool for advocates, researchers, doctors, policy makers, and even the general public, that will allow them to find all current information on myalgic encephalomyelitis in one place.
Want to write to the Health Minister but need a hand? Here’s a handy guide to creating your own letter.
Now’s the time to write, before the election!
Update: NIH confirms RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations and made clear there would be more than one RFA, without saying how much money it would commit. The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive research strategy for ME/CFS research
On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. What follows is a full transcript of the conference call. You can view the transcript and listen to the audio of the call on the NIH website. On the call were
On Feb. 8, I wrote to NIH Director Francis Collins to express concern over the NIH’s mostly negative responses to the CFS Advisory Committee’s latest recommendations; the slow pace of formal patient involvement in the NIH’s new ME/CFS research program; and the originally-released use of the outdated Reeves criteria for selecting patients for the upcoming NIH inpatient
