On September 25, 2025, #NotJustFatigue hosted a first-of-its-kind virtual congressional briefing, Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS, bringing together leading researchers, people with ME/CFS, and policymakers in one room. The event featured Dr. W. Ian Lipkin of Columbia University, a video on Cornell researcher Dr. Maureen Hanson, founder and Executive Director of # NotJustFatigue Elizabeth Ansell, and patient advocate Heidi Menera Norgaard, moderated by journalist and author Ryan Prior.

The numbers are stark: ME/CFS affects 9 million Americans, a quarter of whom are housebound or bedbound, yet NIH spends just $13 million a year on the disease, a figure experts say needs to increase roughly 40 times to reach parity with illnesses of comparable burden. There are still no FDA-approved treatments or diagnostics. What does exist is the NIH’s ME/CFS Research Roadmap, a comprehensive plan developed by scientists, researchers, and patient advocates, and this briefing made the case directly to congressional staff that it must be funded and implemented now.

Watch the briefing on demand at www.notjustfatiguelivestream.org, read the entire transcript here, or watch a recap of the event here.