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Category Archives: NIH

Enrolling: NIH Focus Group on PEM

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Overview The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be used to learn more about PEM in daily life as well as to hear about your experiences with Cardio Pulmonary Exercise Testing (CPET) if you have experienced it. Who: The study is run out ...

A Year in Review: Celebrating the 2018 Achievements of Our Community

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2018 has been a big year at #MEAction!  Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end ...

#MEAction Responds to NIH

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As many of you know, #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. To read about the details of ...

Advocacy Round-Up: End-of-Year, 2018

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Our community's advocacy work end with a big finale with our meeting with the director of the U.S. National Institutes of Health (NIH)!  Catch up on the latest global news from the past few months. U.S. NIH #MEAction representatives met with the National Institutes of Health (NIH) director, Dr. Francis Collins, and other ...
woman at protest holds sign that reads, "Dear NIH we may be missing but we do exist!!!"

#MEAction met with NIH Director – here’s what happened

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#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 ...

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 sent a letter accompanying the petition, received the response below ...

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 government officials accountable for their decisions that affect our daily ...

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 science.  If you'd like to see a quick run-down of ...

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 for our lives, and we’re seeing the fruits of that ...

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 sent a large box containing the petition and 50,000 signatures ...