#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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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.
Mark your calendars! The CDC will hold its next ME/CFS Stakeholder Engagement and Communication (SEC) conference call on Wednesday, Sept. 23 at 3 pm Eastern Time. Find information on how to call
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.
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.
The NIH is doing little to expedite a coordinated, outcomes-focused plan for ME/CFS research, an enormous missed opportunity in the era of COVID-19. Editor’s note: This is part of a report