#MEACTION USA FEDERAL AGENCIES
We are fighting for research, recognition and medical education from the NIH and CDC.
We must hold the National Institutes of Health (NIH) and Center for Disease Control and Prevention (CDC) accountable for addressing the crisis of myalgic encephalomyelitis, which affects more than 1 million Americans.
The NIH has long failed to invest adequate – and equitable – resources into ME, leaving our community neglected for nearly four decades. The result has been a trickle of research investment into ME, which has scared away scientists from focusing their careers on ME/CFS.
Likewise, the CDC has failed people with ME for nearly four decades. It has failed to educate medical providers about the disease, leaving patients mired in stigma and without knowledgeable doctors to treat them. The CDC has failed to undertake the widespread epidemiological study that would advance our knowledge of how the disease affects Americans.
Federal advocacy work is LONG and HARD. Federal agencies often work at an incremental pace and the bureaucratic intransigence can be maddening but we must SHOW UP again and again and again to hold them accountable for fixing the crisis of ME after decades of neglect. #MEAction takes an inside-outside approach to our federal advocacy. We will sit at the table and also protest in the street.
#MEAction activism in the U.S.
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#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
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
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
#MEAction is proud to join Solve ME/CFS Initiative (Solve M.E) and 18 other chronic disease stakeholders to sign a strong letter to Congress asking them to urgently prioritize long COVID
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
On Wednesday, September 23 the CDC held its ME/CFS Stakeholder Engagement and Communication (SEC) conference call and the #MEAction community showed up to make our voices heard! Here is our initial summary of what you need to know.