Solve MECFS Initiative

The treatments we're all waiting for start with research, and a proposed federal rule could put that research at risk.

The government has proposed new rules that would allow active research studies to be canceled at any time, even when the science is going well, and would put political appointees in charge of approving every research grant instead of scientific experts.

For families living with ME/CFS and Long COVID, this isn't abstract. Our research depends on studies that follow patients for years. When a study is canceled halfway through, everything is lost: trust in the scientific process, the data that was collected, the trained staff, and the answers patients were counting on.

The public has until July 13 to respond, and your voice is crucial. You can call your members of Congress, email them, or submit your own public comment, all from home, in just a few minutes. Here are some places to get started:

Toolkit to call & email your Members of Congress:
https://solvecfs.quorum.us/campaign/164430/

Read the full Federal Guidance:https://www.govinfo.gov/content/pkg/FR-2026-05-29/pdf/2026-10817.pdf

Instructions on how to submit a public comment:
https://solvecfs.org/how-to-submit-a-public-comment-on-the-proposed-federal-grant-rule/

A useful deep dive analysis on the federal guidance:
https://www.ropesgray.com/en/insights/alerts/2026/06/omb-proposed-revisions-to-the-uniform-guidance-key-takeaways-for-award-recipient-organizations

Please share this post. Most people have no idea this is happening, but it will impact so many of us.

Watch now! View the recording of our webinar "Sequence ME & : The Search for and Long Covid Biomarkers and Subtypes," featuring the DecodeME Management Team.

https://youtu.be/v6VQ2593m-8