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
#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
Liisa Lugus has been bedbound with extreme myalgic encephalomyelitis for 13 years and is losing her current home. She has nowhere to go and needs our help: https://www.tilt.com/tilts/liisa-lugus-urgent-housing-and-long-term-care-fund https://www.facebook.com/friendsofliisalugus/info/?tab=page_info
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
