Now that our government has narrowly avoided a shutdown, I’d love to share some insights about next year’s federal budget and how we are helping to shape it today.
A key goal of Advocacy Day 2021 was to circulate Chairwoman Eshoo and Representative Lofgren’s “e-Dear Colleague” letter, requesting an additional $10 million for the chronic fatigue syndrome program at the Centers for Disease Control (CDC). Advocates who met with members of the relevant House and Senate Appropriations subcommittees also received special customized talking points to educate subcommittee decision-makers about the value of this urgently needed increase.
Thanks to record-breaking participation in ME/CFS Advocacy Week, we secured 53 bipartisan supporters for our $15.4M FY22 appropriations request; that’s the largest number of signatures on an ME/CFS appropriations letter in history! If successful, this increases CDC funding for ME/CFS by 300% and also ensures continued participation in the Dept. of Defense Peer-Reviewed Medical Research Program, which provided more than $500,000 to ME/CFS researchers last year.
But we didn’t stop there. We’ve already secured House Committee Report language directed to the Director of the National Institutes of Health (NIH) to:
“…expand ME/CFS efforts such as new ME/CFS disease-specific funding announcements to deliver needed diagnostics and treatments as quickly as possible and mechanisms to incentivize researchers to enter the field.”
This timely direction from Congress is urgently needed, but will only come into play if Congress passes a budget for next year. The Committee goes on to recognize the scientific and clinical opportunities in post-viral research and calls for an “expansion of efforts to understand the underlying causes and risk factors for individuals with post-acute COVID-19 syndrome (Long COVID) and ME/CFS, with a focus on diagnosis, treatment, and prevention.”
This is a huge victory, and one made possible by people like you.
I hope you will consider investing in our advocacy efforts today. With your support, we can continue to educate our representatives about the horrible suffering experienced by people with ME/CFS, and make them aware of how the economic losses experienced by our community impact all of us. Our stories matter and our voices deserve to be heard by the decision-makers who have the power to create life-changing policies. Together, we can make a difference.
Director of Advocacy and Community Relations