May 28, 2020

Van Hollen, Markey, Bipartisan Group of Senate Colleagues Call for ME/CFS Medical Research Funding in Upcoming Coronavirus Relief Package

U.S. Senator Chris Van Hollen (D-Md.) joined Senator Edward J. Markey (D-Mass.) and a bipartisan group of their Senate colleagues in calling on Senate Leadership to prioritize medical research funding for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in any upcoming coronavirus relief package.

ME/CFS is a chronic, complex, and systematic disease that limits the daily activities of up to 2.5 million Americans. Viral outbreaks, similar to the current coronavirus pandemic, have triggered an increase in ME/CFS patients in the past. Action is needed to prepare for a potential wave of post-coronavirus patients with ME/CFS like symptoms. The National Institutes of Health (NIH) plays an indispensable role developing methods to properly diagnose and treat ME/CFS patients. By increasing medical research funding for ME/CFS, Congress can equip the U.S. health care system with the tools needed to effectively respond to the coronavirus pandemic ensuring no patients are left behind. 

Other Senators signing the letter include Senators Cory Booker (D-N.J.), Angus S. King Jr. (I-Maine), Debbie Stabenow (D-Mich.), Kyrsten Sinema (D-Ariz.), Elizabeth Warren (D-Mass.), Jacky Rosen (D-Nev.), Mazie Hirono (D-Hawaii), Kevin Cramer (R-N.D.), Richard Blumenthal (D-Conn.), Michael Bennet (D-Col.), and Dianne Feinstein (D-Calif.).

“Congress must take the necessary steps to maximize the ability to properly diagnose and treat post-COVID-19 patients with ME/CFS-like symptoms and ensure these patients are not left behind,” write the Senators in their letter to Senate Majority Leader Mitch McConnell and Senate Minority Leader Charles Schumer. “Strengthening the existing research infrastructure for ME/CFS will equip our nation with the resources necessary to improve the overall health of our nation moving forward.”

The full text of the letter is available here.

In their letter, the Senators call for inclusion of a supplemental NIH appropriation of $15 million each year over the next four years. The Senators also call for report language accompanying the appropriation to direct the NIH to prioritize the following:

  • New ME/CFS disease-specific funding announcements to deliver needed diagnostics and treatments faster
  • An initiative to reach consensus on the ME/CFS case definition
  • Mechanisms to incentivize researchers to enter the field