#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 and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of
Calls for immediate public release of RECOVER’s clinical trial design
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
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).