NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis. With only a few weeks’ turn-around, the #MEAction NIH working group met and was able to produce a compelling response based
The National Institutes of Health conference on myalgic encephalomyelitis (ME) research is fast approaching on April 4th-5th in Bethesda, MD, and #MEAction will be hosting a table to represent our community at the conference. We are looking for volunteers attending the conference who can help staff the table, which involves answering questions about #MEAction and
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 study. There will be
#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
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
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.
#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,
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
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 ME, including a representative from
