Join the #MillionsMissing San Francisco Demonstration on May 25
April 18, 2016
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Please join us in San Francisco, or send us your photo. Help us all to be seen and heard!
Author: #MEAction
Keep PACE out of WebMD and HealthDay
April 15, 2016
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Web MD, the largest online publisher of news and information regarding health and well-being, has released its “latest news” about ME/CFS in an article based on the discredited PACE trials. It asserts that “British researchers concluded that a form of talk therapy, called cognitive behavior therapy, and graded exercise therapy are among the best treatments for chronic fatigue.”
Communications with NIH
April 13, 2016
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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
#MEAction USA leaves the USAWG
April 10, 2016
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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
NIH Calls For Additional Research Proposals to Study ME/CFS
April 7, 2016
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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.
Join this day of protest: May 25th
April 6, 2016
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#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
PETITION: ME is not MUPS (Medically Unexplained Physical Symptoms)
April 6, 2016
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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
Caravana La Paz: The continued fight for equality in Bolivia
April 5, 2016
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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
Tell your Wales, Northern Ireland or Scotland election candidate that M.E. Matters Now!
April 5, 2016
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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?
HHS publishes revised responses to CFSAC recommendations about NIH initiative
March 30, 2016
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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