Advocacy Success! Florida Members of Congress Take Action for ME/CFS

Florida Members of Congress Take Action for ME/CFS

Congressmen Gus Bilirakis (left) and Darren Soto

Solve M.E. teamed up with local Florida advocates to launch a lightning advocacy action with huge success this week. Congressmen Gus Bilirakis and Darren Soto agreed to lead a Florida Congressional delegation to sign a letter to National Institutes of Health (NIH) Director, Dr. Francis Collins, urging more immediate action for research on ME/CFS. In just three business days, the team secured the support of all 27 representatives from Florida state!

Read the letter on our website at: https://solvecfs.org/wp-content/uploads/2020/02/Ltr-to-NIH-ME-CFS-Support_02.13.20.pdf  and don’t forget to send a thank you to @RepGusBilirakis and @RepDarrenSoto  on Twitter for leading the charge.

Congratulations to all of Florida advocates who made this action a success!

​​​Solve M.E. Stands Up for People with ME/CFS, Advises Against Increasing the Number of Disability Reviews for Social Security Claimants

Solve M.E. formally submitted public comments to the Social Security Administration (SSA) strongly urging a rejection of proposed rule in Docket SSA-2018-0026. The proposed rule creates a new category for disability recipients that would increase the number of continuing disability reviews (CDRs). If this new rule were to go into effect, SSA would ramp up CDRs, potentially creating unnavigable obstacles for even qualified beneficiaries of the program.

Solve M.E. firmly believes this proposed rule will cause harm to disability beneficiaries with ME/CFS while increasing SSA expenditures and abandoning our most vulnerable citizens to poverty. Solve M.E. also included responses from the ME/CFS community about the proposed regulation in its formal comments. In doing so, Solve M.E. ensured that vulnerable people with ME/CFS were able to contribute their opinions anonymously and without fear of reprisal.

Read Solve M.E.’s public comments in their entirety here: https://solvecfs.org/wp-content/uploads/2020/02/Public-Comments-NPRM-84-FR-63588-Jan-2020.pdf

Solve M.E. Offers Guidelines to Help ME/CFS Researchers Access Additional $350 Million in Federal Funding

In January we told you about Six Major Federal Wins for ME/CFS. One of those victories was the success of Solve M.E.’s two-year effort to add ME/CFS as an eligible topic area for the Peer Reviewed Medical Research Program (PRMRP).

This program will receive $350 million in 2020, which ME/CFS researchers can now apply for and compete to receive. In order to help researchers take advantage of this new opportunity, Solve M.E. Director of Research Allison Ramiller has created helpful guidelines explaining in detail the application process and providing quick links to the application portal and other resources of pertinent information.

View the guidelines here: https://solvecfs.org/wp-content/uploads/2020/02/PRMRP-Funding-Info-and-FAQ-Flyer.pdf

Please share the information with researchers who may be interested in pursuing funding!