Advocacy Week 2026 is a wrap. Before we move into next steps, we want to report back on the week: what we set out to do, what we pulled off, what we heard back, and where things stand now.
What happened during Advocacy Week:
In coordination with #MEAction, with input from the Open Medicine Foundation and Bateman Horne, we ran three tracks simultaneously this year: outreach to patient safety & regulatory agencies; state medical board and chief medical officer outreach; and federal appropriations budget advocacy. Here’s what we accomplished across all three:
- 497 people signed up to participate in Advocacy Week
- 118 letters were sent to Patient Safety and Regulatory Agencies across 30 states and reported back to us, formally documenting the links between a lack of medical education about ME/CFS and patient safety and healthcare quality issues.
- 561 people signed onto our community letters to both individual State Medical Boards and the national Federations of State Medical Boards. The forms are now closed, and we emailed the letters and sent physical copies in the mail.
- 42 medical professionals signed onto our Chief Medical Officer outreach letters
- 918 community members took federal action, with 2,516 individuals reaching out to Senators and Representatives during a critical federal funding window.
Our asks this year were:
- To keep ME/CFS as an eligible topic area in the Congressionally Directed Medical Research Project (CDMRP)
- To provide at least $50 million in funding for the implementation of the NIH ME/CFS Research Roadmap
- To increase funding for the CDC’s ME/CFS program to $15.4 million.
State Level Efforts:
Responses have started coming in from agencies across 28 states. The most common answer wasn’t a yes or a no to our requests– it was a referral. Agencies in Alabama, Arizona, California, Colorado, Maine, Maryland, Michigan, Minnesota, New Hampshire, Oregon, Rhode Island, Washington, and West Virginia pointed us toward their State Medical Boards. Several additional states directed us towards either their state medical associations, or occasionally third-party umbrella organizations that manage patient advocacy for their state.
This is useful information. It provides us documented pathways and, in many cases, exactly the written warm introduction we need for the next wave of outreach. This is particularly important because state medical boards directed us to go through formal patient safety and regulatory agency complaint channels in the past. We did that, and now we have the grounds to say: we have been informed that you ARE the people we need to talk to. So let’s talk!
The standout response was Vermont’s. The Vermont Department of Public Health reached out and we were able to hold a meeting on April 13. During that meeting, we received approval to help update Vermont’s Department of Health ME/CFS page, and one of our community advocates in Vermont is holding a follow up meeting with their State Health Commissioner. #MEAction created and presented a draft update for Vermont along with a separate page oriented to medical providers that we may be able to use as a model for other states.
Additionally, our President and CEO, Emily Taylor, received a personal phone call from the Ema, the Director of the Sacramento office. During the chat, they discussed the overwhelming response, potential allies, and next steps.
Federal Level Efforts:
This year’s big win is that we were able to convince a Senate champion to take on an additional request to fund the NIH ME/CFS Research Roadmap for at least $50 million. Sen. Ed Markey’s office has been a long term champion for our community, but an extra $50 million is not a tiny ask. We asked and their office agreed to carry it for us. We are so grateful to them!
On the House side, Zoe Lofgren has stepped in as our new lead champion, which fills a huge gap we had last year after Rep. Eshoo, our previous lead champion in the House, retired. As a result:
- We have had 10 senators sign on in support of our Labor, Health, and Human Services Appropriations Requests including both $15.4 Million in CDC ME/CFS program funding, and $50 million in NIH ME/CFS Research Roadmap Funding.
- We have had 9 Senators sign on in support of our Department of Defense Appropriations Request to keep ME/CFS as an eligible topic area in the CDMRP.
On the House side, 5 Representatives signed on in support of our Centers for Disease Control ME/CFS program funding request, and 2 signed on to our request to keep ME/CFS in the Peer Reviewed Medical Research Program (that piece is usually determined by the Senate budget, but having it at least on the radar on the House side can help smooth the administrative pathways). With a new champion in the House, we have so much room to build on this in coming years but it feels good to have a foot in the door there now, too.
What we are doing right now:
A number of follow-ups are ongoing:
- Several states’ Patient Safety & Regulatory Agencies haven’t yet replied to our initial outreach. Responses are still coming in.
- The State Medical Board sign-on letter forms are now closed, and letters were emailed and mailed out last week. We have begun hearing back that our letters are scheduled to be presented in upcoming board meetings. We will continue to follow up as we hear back.
- FY2027 appropriations negotiations are actively underway. While there ARE a series of budget deadlines throughout this year, we don’t expect to have final results of our appropriations efforts until after the election in November as the budget remains in negotiations.
What we hope happens next:
We want State Medical Boards on record formally acknowledging that ME/CFS competency belongs in the licensure pathway, not as optional knowledge. From there, our path runs through the Federation of State Medical Boards, which is the body the national licensing exam boards actually listen to. Every meeting we secure, every referral we follow up on, adds to the documented record that makes that ask credible and shows that the community is united behind these requests.
What might happen over the next 1–2 years:
This is a long-term effort: there are multiple organizations in our community chipping away at pieces of this from different angles. The ultimate goal is to get ME/CFS questions on the United States Medical Licensing Examination (USMLE) and American Board of Internal Medicine Exams (ABIM). When that happens, medical schools will have to teach about ME. But getting there is going to require building a network of champions to support us, and we’re still in the beginning stages. We’re building deliberately because the relationships and open doors we find now are what will start to drive a consensus around supporting our community at the national exam board level.
We’ll keep reporting back as things develop. Questions? Reach us at advocacy@solvecfs.org.
Thank you deeply for all the spoons and energy you contributed to the community during advocacy week this year.
Warmly,
Solve M.E. & #MEAction
#MEAction and Solve M.E. recognize that meaningful systems-level change builds on sustained, collaborative efforts across the field. We are grateful for and acknowledge the strong work in medical education and regulatory initiatives led by Bateman Horne Center and the Open Medicine Foundation’s Medical Education Resource Center (MERC) and #MEAction, including engagement with state licensing boards and contributions to clinician education standards. These collective efforts reflect shared momentum toward improving oversight, education, and accountability in the care of people with ME/CFS and related conditions.