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
We wanted to take this opportunity to announce to the community that #MEAction USA has decided to formally leave the US Action Working Group (USAWG). We will definitely continue to collaborate with many of its members and welcome them, and all organizations and individuals in the community, to use this platform to share their work and
In a first for ME/CFS research, NIH launched a creative grant expansion program to jump start ME/CFS research in the short term by supplementing current grants.
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.
#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. Can’t make it to
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
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.
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
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
