Rep. Jamie Raskin’s landmark legislation, H.R. 7057, The Understanding COVID-19 and ME/CFS Subsets Act, will be the first piece of legislation to authorize funding from the National Institutes of Health (NIH) for ME/CFS research and education.
As of October 1, H.R. 7057 has an impressive 43 co-sponsors, and this includes 3 new Republicans, Rep. Bill Posey [R-FL-8], Rep. Mark E. Amodei [R-NV-2] and Rep. Rodney Davis [R-IL-13].
To read the bill in its entirety and see a full listing of co-sponsors, visit this link.
Solve M.E. Collaborates with the National Health Council on The Science of Patient Engagement
Solve M.E. has provided the perspectives of the ME/CFS community to the National Health Council (NHC) Rubric to Capture the Patient Voice, a set of patient engagement recommendations for research practice across the nation.
About the Rubric to Capture the Patient Voice
There is little consensus-based guidance on how to conduct patient engagement or assess whether an approach to patient engagement will yield meaningful results for all parties involved. Our partners at the NHC seek to identify and implement best practices for integrating the patient voice into research and health care decision making.
The Rubric to Capture the Patient Voice is designed to do just that. It’s a tool that the patient community or any other health care organization or provider can use to evaluate patient centeredness and to guide meaningful patient engagement throughout any activity they might undertake.
The great work of this patient-focused research consortium was presented at the 2020 Science of Patient Engagement Symposium.
Solve M.E. is working diligently with our friends at the NHC and other national disease-specific organizations to meaningfully capture and include the patient voice in U.S. research initiatives at large.
Learn more about the NHC Science of Patient Engagement here.
When you make your gift today, we immediately pour it into actionable, powerful tools for change. Right now, you can join other donors in funding the You + ME Registry and Biobank, scientific research and our legislative agenda all for the purpose of making ME/CFS widely understood, diagnosable, and treatable for you. Join the community effort and donate to Solve M.E. today!