Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed
#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID. Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to
#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective
We want to make you aware of new funding allocated through the Covid-19 relief package that has potential to make a real impact for ME, and why our federal agency work is at the forefront of all that we do. It was announced before the new year that $1.25 billion will be allocated to the
On December 3-4, 2020, the National Institutes of Health (NIH) / National Institute of Allergy and Infectious Diseases (NIAID) hosted a virtual Workshop on Post-Acute Sequelae of COVID-19. We know acute COVID-19 has an extraordinary number of multisystem manifestations: pulmonary, cardiovascular, neurologic, psychiatric, musculoskeletal, endocrine, renal, hepatic, gastrointestinal, and dermatologic. The workshop’s goal was to
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time. #MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep
The Trans-NIH ME/CFS Working Group will hold a telebriefing about updates on NIH’s efforts to advance research on ME/CFS on November 5, 2020, 11:00 am until 12:00 pm ET. Read more about #MEAction’s letter to NIH on accelerating ME/CFS research here. The guest speaker will be Allison Kanas, Administrative Director & Director, Community Outreach & Engagement at the Center for Solutions for
NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results.
NATIONAL INSTITUTE OF HEALTH COMMITTEE MEMBERS Jennifer Brea (Executive Director, #MEAction) Jennifer co-founded #MEAction and directed the award-winning documentary Unrest. Prior to getting sick, she was pursuing a Ph.D in political economy and a master’s degree in statistics at Harvard. She is a frequent contributor to MEpedia’s science pages and is passionate about engaging patients
The NIH is shaping research initiatives to study the long-term consequences of COVID-19 (long COVID), but it lacks the coordinated, outcomes-focused strategy necessary to deliver biomarkers and treatments to the people who need them.
