×

Category Archives: NIH

Enrolling: NIH Intramural Study

/ by / 0 Comment
Overview The objective of this research study is to look in-depth at the clinical and biological characteristics of ME/CFS. Participants with ME/CFS are inpatients at the clinical center at NIH for approximately two weeks on their first visit and another two weeks if they return for the second round of the ...

Get involved: support science and advocacy this April

/ by / 0 Comment
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 ...

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

/ by / 0 Comment
#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 ...

Enrolling: NIH Focus Group on PEM

/ by / 11 Comments
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

/ by / 3 Comments
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

/ by / 1 Comment
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

/ by / 0 Comment
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

/ by / 2 Comments
#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

/ by / 3 Comments
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

/ by / 0 Comment
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 ...