#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.
We are ALL stakeholders in this fight.
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#MEAction activism in the U.S.
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U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases
Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience
Email Doctor Unger about the Misinformation at CDC
People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited recommendations for Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET).
Research Update: The NIH Intramural ME/CFS Study
National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate
NIH Comes up Short Once Again
No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC)
NIH Long COVID research lacks clear plan to identify and track ME/CFS
MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or
The Last Two Years Changed the World…
What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world