Solve President and CEO Emily Taylor recently penned an op-ed piece for Open Access Government calling for more funding and multidisciplinary collaboration for research of ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs), and the establishment of a dedicated IACCI research institute at the National Institutes of Health (NIH).
Despite over three million Americans being disabled by ME/CFS and nearly 40 years of research by the National Institutes of Health (NIH), the disease remains poorly understood. Patients continue to endure the lowest quality of life among all measured conditions, and decades of NIH efforts have yet to yield a single FDA-approved treatment. Similarly, the $1.25 billion RECOVER Initiative aimed at addressing Long Covid has failed to develop treatments.
Tens of millions of Americans are currently living with chronic, often disabling symptoms that affect multiple body systems after acute infections like strep throat, mononucleosis, or tick-borne diseases. The prevalence of these conditions is steadily increasing, raising alarms, especially concerning children’s health.
When it comes to ME/CFS, Long Covid, and other IACCIs, the NIH has failed to effectively serve an enormous patient population. Despite the mounting health and economic toll, the NIH has yet to develop comprehensive diagnostics, treatments, or cures for IACCIs.
The NIH’s fragmented structure hinders an effective response, leading to scattered and inconclusive research. There are widespread calls to restructure the NIH to streamline operations and address these critical challenges.
Taylor’s call for a dedicated IACCI office at NIH is part of a broader movement, which includes a piece in the Federation of American Scientists journal by ME/CFS advocate and journalist Ryan Prior.
Solve is also working with a coalition of IACCIs that includes representative organizations from ME/CFS, Long COVID, PANS/PANDAS, Chronic Lyme, POTS and other dysautonomias.
Earlier this year, Solve co-authored white paper on the topic, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH.” Solve’s 2024 Advocacy Week participants were encouraged to share the white paper when meeting with legislators to educate them on the emerging science and community efforts under the umbrella of IACCIs and how a dedicated NIH funding mechanism could make a difference.
Emily wrote the piece to ensure that the needs of our community are prioritized at NIH and remind stakeholders of the urgent need for more and better ME/CFS, Long Covid, and IACCI research.
Read Emily’s op-ed in Open Access Government here.