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).
Image/US Congress
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.
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.
Thank you for publishing this article. Many patients have waited over 20 years for research to progress and find treatments. In the meantime, we are losing decades of our lives because we can’t work and are home bound.
Thank you for helping throw back the curtain on a dis-ease condition that is completely underfunded and misunderstood. We need all the help we can get to get funding for research for solutions to regain our lives! Completely agree with OB’s comment above!