This year, Solve is beginning one of our most ambitious advocacy projects to date — one which could alter the research landscape for ME/CFS, Long Covid, and other infection-associated chronic illnesses for decades to come. We’re working with our champions in Congress to call for the creation of a new, dedicated office at the National Institutes of Health (NIH).
This office would be responsible for overseeing and coordinating research and development efforts into infection-associated chronic illnesses within the NIH, accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others. Currently, these diseases are funded across multiple centers and institutes without any method of synergy or oversight to avoid duplication.
There is tremendous value in creating a centralized office to coordinate this research. The multi-systemic nature of infection-associated chronic illnesses requires that research stretch across multiple specialities, focusing not only on specific bodily systems, but the interactions between them.
“This new office would be critical to avoid potentially redundant research and ensure related research is cross- pollinating among different centers at the NIH.”
– Emily Taylor, Solve VP of Advocacy & Engagement
An office will enable multi-disciplinary approaches and interagency collaboration while creating new opportunities for patient-engagement and stakeholder input. This office can over- see and integrate research.
Our decades of experience in the ME/CFS community have also led us to recommend that the office should be located in the Office of Research on Women’s Health (ORWH). It is a common feature of infection-associated chronic illnesses to disproportionately impact women — ME/CFS impacts women 3-4 times more often than men. Like many autoimmune diseases, the predominant impact on women is cited as a factor for underfunding, dismissal and stigma.
Infection-Associated Chronic Illnesses currently do not have a dedicated funding source within the NIH and do not have a dedicated institutional home. This structure creates barriers to the development of multi-systemic research collaboration and is slowing the rate of progress in these disease areas which predominantly impact underserved and vulnerable communities. Establishing a coordinating office is a critical first step to addressing those barriers and creating an entity dedicated to coordinating and synergizing multidisciplinary projects across multiple institutions.