At Solve M.E., our mission is to drive research and advocacy efforts for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs). This year, we have championed three critical appropriations requests to Congress, aiming to secure funding and resources to advance our cause. Two of our appropriations efforts are specific to ME/CFS. Below, we outline the purposes and significance of each of these efforts.
An appropriations sign-on letter is a formal request signed by multiple members of Congress, usually addressed to the leaders of the Appropriations Committees or Subcommittees, urging them to allocate specific funding for particular programs, projects, or initiatives in the federal budget.
You can learn more about the appropriations process here.
1. Inclusion of ME/CFS in the Peer Reviewed Medical Research Program (PRMRP)
Our first appropriations effort focuses on ensuring the continued inclusion of ME/CFS in the list of Congressionally Directed Topic Areas within the Peer Reviewed Medical Research Program (PRMRP). This program is vital for funding research that addresses the health challenges faced by our military personnel and veterans. While we make this ask every year, it is particularly crucial due to the current political climate as programs that do not have advocates asking for their continuation are getting dropped from the budget.
Funds included in this account are shared with many medical research programs at the discretion of the Department and support research across the full range of science and medicine, with an underlying goal of enhancing the health, care, and well-being of military Service Members, Veterans, retirees, and their family members.
While this program itself is focused on the military, the research that comes out of it holds the potential to make a much broader impact.
Our argument for the continued funding of this program:
- Increased Risk for Service Members: Evidence suggests that ME/CFS can be triggered by physical harm, viral infections, and environmental factors, situations that service members are more likely to encounter.
- Impact of COVID-19: The pandemic has significantly increased the prevalence of ME/CFS, with many COVID-19 survivors developing long-term, debilitating symptoms and an eventual ME/CFS diagnosis.
- Economic Burden: The cost of ME/CFS in terms of medical expenses and lost income is staggering, affecting military readiness and the well-being of veterans and their families.
By securing this inclusion, we aim to continue vital research that can lead to better understanding, prevention, and treatment of ME/CFS among our service members and the broader population.
2. Establishing an Office of Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH
Our second request is for $10 million in additional resources to establish an Office of Infection-Associated Chronic Conditions and Illnesses (IACCIs) at the National Institutes of Health (NIH). The $10 million would be for the establishment of the office, which is separate from research funds. This request is happening in tandem with our advocacy week conversations and is one piece of our broader push for legislation and research funding.
Why This Matters:
- Comprehensive Research Coordination: This office will streamline and coordinate research on various infection-associated chronic conditions, including ME/CFS, Long Covid, fibromyalgia, and other related illnesses.
- Addressing Long Covid: With a significant portion of the population experiencing long-term symptoms post-COVID, there is a critical need for coordinated research efforts.
- Economic and Social Impact: ME/CFS and related conditions impose profound costs on families and society. Coordinated research can lead to better treatments and improved quality of life for millions affected.
Complementing our Advocacy Week 2024 efforts, Solve co-authored the white paper, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH.” outlining the economic burden caused by IACCIs and the lack of appropriate NIH funding to meet the needs of those who suffer. In the white paper, one of the recommended policy solutions to this problem is the establishment of a dedicated IACCI research entity at NIH.
The establishment of an Office for IACCIs will enhance the efficiency of research efforts, ensuring that resources are used effectively and that patient and stakeholder engagement is prioritized.
3. Expanding CDC’s Multidisciplinary ME/CFS Programs
Our third request is for $10 million to support and expand the Centers for Disease Control and Prevention’s (CDC) work on ME/CFS. The CDC has been a wonderful partner to the ME/CFS community and is dedicated to finding ways to support us.
Why This Matters:
- Continued Research and Education: Funding will support ongoing clinical assessments and expand the CDC’s ECHO-style education programs, particularly benefiting rural and underserved communities. For reference – the LC&FIRP ECHO Program has been a shining star example of what can happen when you bring together medical providers, patients, caregivers, and specialists in the field to find pathways together.
By expanding these programs, we aim to improve diagnosis, treatment, and support for those suffering from ME/CFS, Long Covid, and related conditions.
Conclusion
We look forward to reviewing the final versions of these letters when they are circulated among members of Congress and to our continued collaboration with congressional allies who are championing our asks.
Our appropriations efforts this year are crucial steps toward advancing research, improving patient care, and reducing the economic burden of ME/CFS and related infection-associated chronic conditions and illnesses. We are grateful for the support of our congressional champions and look forward to working together to secure these vital resources. Your continued advocacy and support are essential as we strive to improve the lives of millions affected by these debilitating conditions.
Stay tuned for updates on our progress and how you can get involved in our advocacy efforts. Together, we can make a difference!
