Dear advocates, allies, and friends:
I’d like to take one last look back at 2022 before we leap forward into an exciting new year. Starting with the Omnibus Appropriations bill, signed into law on Dec. 29, 2022, where your advocacy got results!
Lawmakers are finally beginning to hear the voices of the millions of people who have suffered from ME/CFS, as our ranks only grow tragically larger. Long Covid is growing the pool of Americans devastated by post-infection associated diseases and your voices are driving change.
A special thank you to those who participated in Advocacy month last year and championed the CARE for Long COVID Act part of which was successfully passed in the Omnibus Appropriations bill.
Despite budget requirements getting tighter as the country treads close to a recession, Solve M.E. was incredibly successful in its Fiscal Year 2023 appropriations efforts after a campaign of advocacy that involved hundreds of Hill meetings by our patients and Government Affairs team.
Among the highlights of the government funding bill for the ME/CFS community:
- $10 Million for Long Covid Research. Solve M.E. was successful in mobilizing efforts through the congressional Labor-Health and Human Services title to bring about greater resources to understand Long Covid and its effects on the daily lives of people. Solve was able to muster support in both the House and Senate to obtain an additional $10 million to deliver patient-centered, coordinated care to those living with Long Covid, including the development and implementation of new models of care to help treat the complexity of symptoms that those with Long Covid experience.
- Access to $370 Million in Congressionally Directed Medical Research Program (CDMRP) Funding. Solve M.E. engaged in an effort to create a separate callout in the Defense Appropriations account, critical to receiving the Defense Department funding ME/CFS is due. Through this account, now, Solve M.E. will be able to successfully receive a portion of the $370 million directed to the CDMRP account. Further, Solve’s efforts to include a rare separate mention for the Department to focus on Myalgic Encephalitis/Chronic Fatigue Syndrome and Long Covid was included in the agreement.
- ME/CFS at the Centers for Disease Control and Prevention (CDC). The agreement allocates $5.4 million to the CDC to support their recent progress in ME/CFS medical education and take several steps to coordinate and bolster ongoing efforts at the agency. For example, CDC would be required under the bill to develop a national epidemiological and disease tracking study of post-infectious syndromes prevalence, specifically the rates of post-acute COVID-19 syndrome and ME/CFS in adults and children. The agreement also urges CDC to strengthen collaboration with, interagency partners, experts and stakeholders, and, the NIH on study design protocol. Additionally, the bill urges CDC to conduct a series of epidemiological studies into the causes, diagnosis, and risk factors of ME/CFS. Finally, it urges CDC to engage physicians and patients in an effort to increase awareness of ME/CFS and disseminate updated clinical guidance.
- Advanced Research Projects Agency for Health (ARPA-H). The bipartisan funding bill includes $1.5 billion—an increase of $500 million above the FY 2022 enacted level—for the President’s Advanced Research Projects Agency for Health (ARPA-H), a historic initiative to help improve the health of all Americans. Solve M.E. has fought hard for ARPA-H to be fully funded because of the unbridled potential for an ARPA-H initiative to overcome research barriers for ME/CFS and Long COVID. ARPA-H is currently hiring program directors – Solve M.E. is proud to join #MEAction and other organizations to “encourage people with expertise in infectiction-associated chronic illness to consider pursuing this opportunity.”
- Postural Orthostatic Tachycardia Syndrome (POTS). POTS is one of the most common forms of dysautonomia, estimated to impact up to 3,000,000 Americans prior to the COVID-19 pandemic. Recent research suggests that many individuals experiencing Long COVID are developing moderate to severe dysautonomia, most commonly presenting as POTS. Due to the sudden increase in the patient population affected by this debilitating disorder, the agreement strongly encourages NIH to support new research on POTS, to address the gaps in current knowledge identified during a previous NIH workshop. The included guidance language strongly encourages NIH to establish a multi-Institute Notice of Special Interest to spur additional needed research addressing the identified gaps in knowledge.
- $350 million approved for Flexible Public Health Infrastructure. $350 million in flexible funding for state and local public health infrastructure needs, an increase of $150 million over FY 2022, and $71 million — a $10 million increase over FY 2022 — for strengthening the public health workforce, including potential medical education about Long COVID and ME/CFS.
- Prepare for and Respond to Existing Viruses, Emerging New Threats (PREVENT) Pandemics Act. In a partial win, the PREVENT Pandemics Act which Solve supported and advocated for did make it into the omnibus – it didn’t include everything we had hoped for but what was included has positive implications for the public health workforce, pathogen tracking, disparities and health outcomes for marginalized populations (such as people with Long COVID and ME/CFS) and pandemic preparedness in the future.
While these victories are huge wins for your advocacy, we still have much work to do. 2023 is shaping up to be a pivotal year for major public and private initiatives. Stay tuned for more updates and join us for Solve M.E. Advocacy week in April to keep this momentum going!
All the best,
Solve M.E. Vice President of Advocacy and Engagement