The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.
The spring meeting of the US CFS Advisory Committee (CFSAC) will take place on Tuesday May 17 and Wednesday May 18 from noon to 5pm (Eastern Time) and will be both livestreamed and available to listen to by telephone. The committee provides advice and recommendations to the Secretary of Health and Human Services (HHS) on
These demands were originally intended for a protest in Washington D.C. alone, but over time, #MillionsMissing has grown into a national, multi-city protest. With that in mind, we will have an open community meeting on Wed. May 11th, 2 pm EDT to discuss the demands and receive input from the community. We will also be
The Norwegian Research Council has announced that it received 737 research proposals from ME/CFS patients and their families in response to a call for ideas in April. Patients and others were invited to send in their ideas by May 3, using a short online form. In the call for proposals in April, Mr Hallén had
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
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
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.
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
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
