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 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
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
