FOR IMMEDIATE RELEASE: Monday, September 12, 2016
CONTACT: Brett Abrams | 516-841-1105 | [email protected]
Members of Congress Urge NIH Director Francis Collins to Strengthen Biomedical Research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
WASHINGTON, DC — In a bipartisan letter to the National Institutes of Health, members of Congress are calling on NIH Director Francis Collins to strengthen biomedical research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
The letter, spearheaded by Rep. Zoe Lofgren (D-CA) and Rep. Anna G. Eshoo (D-CA), has been signed by 55 members of Congress and urges the Trans-NIH ME/CFS Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. The letter also asks that the Trans-NIH ME/CFS Working Group update Congress with the current status of its planning efforts through 2018.
VIEW THE LETTER AND FULL LIST OF SIGNERS HERE:
Advocates from #MEAction, an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis — in collaboration with the Solve ME/CFS Initiative and dozens of advocates across the country — have been calling on members of Congress and the National Institutes of Health to expand research and funding for the disease.
“Myalgic Encephalomyelitis is a devastating disease that forces more than 1 million Americans to abandon their careers and spend decades either homebound or bedridden at great cost to themselves and the economy,” explained Jennifer Brea, co-founder of #MEAction. “That’s why this unprecedented, bipartisan support from members of Congress is so encouraging. Our elected officials know that we need real investments in research to guarantee that people who suffer from this disease will no longer be relegated to the shadows. That’s why we are calling on the NIH to dramatically increase funding into ME research and treatment to help alleviate the millions currently suffering in silence.”
Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work.
Researchers have estimated that 1 to 2.5 million Americans have ME, yet as the National Academy of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.
FOR MORE INFORMATION ABOUT MYALGIC ENCEPHALOMYELITIS: http://meaction.net/about/what-is-me/
For more information, or to speak with someone from MEAction about the disease and current research efforts, please contact Brett Abrams at 516-841-1105 or by email at [email protected].
# # # # #
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences and create community, with the