Category: Awareness

SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding

On May 24, 2016, the National Institutes of Health (NIH) released the first ever Request for Information (RFI) regarding ME/CFS, requesting submissions addressing new research strategies for the disease. Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI in the form of an imitation funding announcement.

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Give your feedback on the #MEAction USA protest demands!

Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: http://millionsmissing.meaction.net/protest-demands The goal of this process is to revise the demands and adopt them

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Blue Ribbon Foundation: An interview with Ryan Prior

Ryan Prior first made waves with his article in USA Today about his experience with ME/CFS that was shared over 2,000 times. He spoke of, as a junior in high school, falling so ill he could no longer attend classes. “I saw about 20 different doctors that year from every specialty you can imagine,” he

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Watch Free Livestream – Tools for Managing ME/CFS

Wednesday, August 3rd, 7pm Mountain – Free Livestream. Lucinda Bateman MD, Founder and Chief Medical Officer of the Bateman Horne Center, will present methods used at the BHC to partner with patients and help them achieve the best possible function and symptom reduction.

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Our losses in the ME community

It’s been a devastating summer for the ME community.  We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and Linda Hayes Burke.  Yesterday, we learned that we lost Tom Jarrett. Jodi Bassett, 41, was a passionate advocate for ME who helped thousands of people better understand their condition through her website The Hummingbirds’ Foundation for

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#MEAction Policy Change: ME, not ME/CFS

The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate

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US: Attend the #MillionsMissing USA call this Sunday!

This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize, and connect with other protesters.  Those who have volunteered to lead a city protest are highly encouraged to attend; those just wanting to learn more about the protests are also very welcome. If this is the

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