Rep. Raskin (MD-08) Introduces First Ever Legislation for ME/CFS Research Funding! Solve M.E. is proud to endorse H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act, to authorize a $60m program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical education ME/CFS initiatives
Representative Jamie Raskin (MD-08) meeting with ME/CFS Advocates as part of Solve M.E. Advocacy Day 2018
This week, longtime ME/CFS champion Representative Jaime Raskin of Maryland’s 8th Congressional district introduced landmark legislation for ME/CFS research. H.R. 7057, TheUnderstanding COVID-19 Subsets and ME/CFS Act,authorizes $60 million over the next four years to expand NIH research into post-viral ME/CFS and also empowers the Department of Health and Human Services (HHS) to provide for public awareness and education campaigns to increase understanding of ME/CFS, with an emphasis on early diagnosis. Additionally, the legislation includes mandatory reports to Congress on the progress of implementing the expanded research program.
“We cannot let the number of ME/CFS cases rise due to a lack of research and understanding. As we battle the coronavirus, this critical legislation will help us respond to this ME/CFS hidden health crisis.”said Rep. Raskin.“While we are facing a monumentally dangerous public health crisis, we must take all necessary steps not only to stem the spread of COVID-19, but also to prevent and control its lasting repercussions.”
Senator Ed Markey (MA) meeting with Solve M.E. and Massachussetts ME/CFS & FM Association in 2017
This legislation follows last month’s Senate Leadership letter by Senator Ed Markey of Massachusetts with a matching proposal calling on Senate Leadership to prioritize medical research funding ME/CFS in any upcoming coronavirus relief package. “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 McConell 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.”
Thanks to your hard work in our largest ME/CFS Advocacy Dayever, Solve M.E. worked closely with both Senator Markey and Representative Raskin to draft vital NIH programming priorities to meet needs of the ME/CFS field including:
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 new and early career researchers to enter the field
Data Collection including epidemiological information, natural history, risk factors, comorbid conditions, and the availability of medical services for individuals with ME/CFS and their families
Establishing new and expanding existing Collaborative Research Centers
Developing a research agenda in collaboration with interagency partners, stakeholders and disease experts
Expanding public and medical education initiatives focusing on early diagnosis and appropriate treatment recommendations
Stay tuned for more updates on this historic effort and ways you can take action! Feel free to thank Senator Markey (@SenMarkey) or Representative Raskin (@RepRaskin) on social media.
When passed, this legislation will bolster ME/CFS research at the National Institutes of Health (NIH) by including an additional $60 million for expanded research opportunities looking at connections between ME/CFS and COVID-19 survivors. It will also enable existing public education programs to include ME/CFS and post-viral disease information, with a focus on early diagnosis.
“We cannot let the number of ME/CFS cases rise due to a lack of research and understanding. As we battle the coronavirus, this critical legislation will help us respond to this ME/CFS hidden health crisis. While we are facing a monumentally dangerous public health crisis, we must take all necessary steps not only to stem the spread of COVID-19, but also to prevent and control its lasting repercussions.”