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
On March 21st, the brave Bolivian AKIPerDis protestors began their 265 mile journey by wheelchair through the Andes mountains to capital La Paz to demand equality and livable disability pensions. The group has already come face-to-face with adversity in many of its forms in the roughly 100 miles that they’ve traveled since the 21st of March. Amidst death
Do you live in Wales, Northern Ireland or Scotland? Can you help push M.E. up the political agenda by sharing the M.E. Matters Now campaign manifesto?
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
Dr Rebecca Goldin, blogging for Sense About Statistics, has said that flaws in the design of the PACE trial “were enough to doom its results from the start”. Her 7,000-word post described the study’s design and the extensive changes to the planned analyses. Dr Goldin, who is the Director of the organisation, writes, “The study
In an invited post on UK charity Action for ME’s blog, Professor George Davey Smith of Bristol University has told patients that the UK’s planned, major ME/CFS project, the Grand Challenge could “herald a new era in ME research”. Action for ME’s CEO, Sonya Chowdhury, described the project, which was announced at October’s UK CFS/ME
This is the first study on ME/CFS conducted by NIH in two decades. One million patients suffer from this disease, too long neglected by both CDC and NIH. It is critical that the Principle Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.
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.
The National Institutes of Health’s (NIH’s) ‘New Deal’ for ME/CFS, particularly the intramural study, has had a very mixed reaction from the patient community. Update: NIH gives update on consulting patients, and says RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations saying its new plans include RFAs (plural) and
After the March 8th telebriefing with the NIH, many advocates in the ME community still came away with questions. Billie Moore, NJME/CFSA Advocacy Chair, and member of the USAWGaAnd CDC’s TDW Workgroup, was one of them. Though representatives of the NIH spoke at great length about the big picture of the new ME/CFS efforts that the organization is
