Thanks to another strong turnout from the ME/CFS community, 14 Senators and 28 Congressional Representatives joined together to sign this bipartisan letter to the U.S. Department of Health and Human Services (HHS) in support of people with ME/CFS. The bicameral letter was sponsored by Senator Ed Markey (MA) in the Senate and Congresswoman Anna
#MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. In addition to NIH director, Francis Collins, M.D., Ph.D., other attendees from NIH included the Director
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 sent a letter accompanying the petition, received the response below from Walter J. Koroshetz,
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 community by donating to our #GivingTuesday campaign this Tuesday, Nov. 27 where Facebook will match your
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 science. If you’d like to see a quick run-down of what’s been going on lately
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 create legislation for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). To our knowledge, this is
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 for our lives, and we’re seeing the fruits of that labor. At the NIH, we’ve
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 symptoms and quality of life. The FDA is considering banning substances that have helped people
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 added an editor’s note (that is all but invisible unless you really go searching for it)
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 sent a large box containing the petition and 50,000 signatures to Francis Collins. The box
