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Category Tag: 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 ...

#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 ...

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 ...

NIH Creates Council to Advance ME Research

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The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The committee, called the NANDS Council Working Group for ME/CFS Research, will be comprised of scientists, clinicians, representatives from advocacy organizations, and individuals with ...

NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!

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The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this ...

Ron Davis Receives $2.5 Million Grant from NIH

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Dr Ron Davis and his team at the Stanford Genome Technology Center have received a large research grant from the National Institutes of Health (NIH) that will fund research for 5 years at $500,000 a year and will involve 15 collaborators, 9 of which have never worked in the ME/CFS field before ...

The NIH Plan for ME is Dismal

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Occupy M.E. describes the NIH's current plan to address the crisis of Myalgic Encephalomyelitis as "do a little and wait." Blogger Jennie Spotila describes the agency's plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative ...

Why we’re Targeting the NIH for #MillionsMissing

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    The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans - estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to ...