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
New US paper says it is critical that scientists world-wide develop consensus on how to identify and classify chronic fatigue syndrome and myalgic encephalomyelitis patients using clinical and research criteria.
#MEAction, in collaboration with the Association of People with Disability (APD) in Bolivia, have launched a campaign to raise funds for the brave individuals that are risking their lives to demand equality from their government. Our goal: raise $10,000 by Saturday, March 19th It all started 50 days ago at the main square in
This week #MEAction, in collaboration with Solve ME/CFS and USAWG, conducted advocacy efforts with members of Congress to make two key requests for the benefit of greater ME/CFS medical research funding. Senators were asked to support a letter to NIH Director Francis Collins requesting that an equitable share of the $2 billion increase in fiscal
Professor James Coyne’s February 9 Belfast talk, “The Scandal of the £5m PACE Trial”, is now available on YouTube. The talk, given at Stormont, the home of the Northern Ireland Assembly, was delivered to a 40-strong audience of Members of the Legislative Assembly (MLAs), doctors, researchers and key health decision-makers. Professor Coyne spoke about how
#MEAction is excited to announce its first protest in Washington DC! Now rescheduled for May 25, 2016! Please join us May 25th for a protest outside of the Health and Human Services building in Washington DC. Our goal is to raise the visibility of this illness and the people living with it. Because of the nature
All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen Mary University of London (QMUL) to release data from the PACE trial. QMUL are due to appeal the UK Information Commissioner’s decision that they should release the data to a patient who requested it, at a
Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding for biomedical innovation and targeting diseases with unmet treatment needs. The $5 billion proposal, called the National Biomedical Research Act, is just one of six bills now being discussed by the Health, Education, Labor & Pensions
