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Browse Actions: United States

NIH’s Dismissive Response to Mary Gelpi’s 50K Petition

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Last month, Mary Gelpi sent a petition with more than 50,000 signatures to the director of the U.S. National Institutes of Health (NIH), Francis Collins, asking the NIH to increase funding for ME/CFS to 100 million annually. Mary's friend, Matt Tyler, who ... Read More

Community Roundup – Telling Our Story to the World

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Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME). In our fall roundup, you'll be inspired reading about the work and accomplishments of some of our community heroes. Support the #MEAction ... Read More

Advocacy Round-up – A Season of Protest and Petition

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The #MEAction community has dug in deep this fall to undertake the incredibly important work - and heavy lifting - of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our ... Read More

Sept & Oct — Research Roundup

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The end of September was a whirlwind! Between the CDC's website work, the CDC's awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn't much time to devote to breaking down the ... Read More

Ten Organizations Ask Congress to Create Legislation for ME/CFS

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On Friday, November 2nd, #MEAction, the Solve ME/CFS Initiative, and eight other ME/CFS organizations sent a letter to our champions in the House of Representatives - Representatives Eshoo (CA18),  Lofgren (CA19), McGovern (MA02), and Raskin (MD08) -  requesting that they ... Read More

Alphabet Soup: Read the Latest about our U.S. Health Agencies and M.E.

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There are a lot of moving pieces to keep track of as we push for our U.S. federal agencies to provide fair and adequate treatment to people with myalgic encephalomyelitis (ME). Together, our community continues to take action to fight ... Read More

Stop the FDA from Banning Compounded Medications that Help People with ME – Take Action!

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For the past 35 years the FDA has neglected to bring meaningful treatments to market for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). The lack of FDA-approved drugs means many patients rely on compounded medications to help improve ... Read More

UPDATE: Cochrane Has NOT Removed “Exercise Therapy for CFS” Review

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It appears that Cochrane will NOT temporarily remove a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), as a report in Reuters had indicated last week. Instead, Cochrane editors have ... Read More

Mary Gelpi Sends 50K Petition to NIH Director, Francis Collins

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Mary Gelpi first published this post on her blog, 25 Pills a Day. Mary launched a petition asking the director of the U.S. National Institutes of Health, Francis Collins, to increase funding to 100 million annually for ME/CFS. She just ... Read More

Cochrane Temporarily Removes Review of “Exercise Therapy for CFS”

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Cochrane has temporarily removed a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). Cochrane is a database of medical reviews and meta-analyses, which medical providers around the world rely ... Read More