Members of Congress Urge NIH Director Francis Collins to Strengthen Biomedical Research into Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Share on facebook
Share on twitter
Share on email

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:
http://meaction.net/wp-content/uploads/2015/04/Letter-from-CongressSep2016.pdf
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].
# # # # #
 

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top