Category: NIH

Get involved: support science and advocacy this April

April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME.  Concurrently, there will be a Congressional lobbying push hosted by #MEAction and SMCI

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Extended deadline – Attend the NIH Conference with a Scholarship from #MEAction!

#MEAction is currently accepting applications from medical students and practicing medical professionals to attend the National Institutes of Health meeting on myalgic encephalomyelitis (ME) research on April 4th-5th, 2019 in Bethesda, MD. The application is now due at 5 p.m. EST on Tuesday, February 26th. The goal of the meeting is to showcase high-quality studies to better understand the state of the science

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Enrolling: NIH Focus Group on PEM

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. They are particularly looking for people in the

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#MEAction Responds to NIH

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 the meeting, click here.

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

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 key NIH leaders

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

#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

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

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,

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Advocacy Round-up – A Season of Protest and Petition

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 lives. We continue to

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Sept & Oct — Research Roundup

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

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