Despite
over three million Americans disabled by ME/CFS and nearly 40 years of research at the National Institutes of Health (NIH), ME/CFS remains misunderstood. Patients still experience the
lowest quality of life of any disease measured, and decades of NIH research have failed to produce a single FDA- approved treatment. The RECOVER Initiative, with $1.25bn dedicated to addressing Long COVID, is falling flat with no treatments to show. In each of these cases, the NIH has failed to serve a significant patient population because of its antiquated, siloed structure.
An unmet medical need
The NIH’s structure, which often favors well-established and broadly recognized diseases, has marginalized less understood and multi-systemic conditions like ME/CFS, Long COVID, postural orthostatic tachycardia syndrome (POTS), and other infection-associated chronic conditions and illnesses (IACCIs). Consequently, IACCI research initiatives remain underfunded, and the medical community is left with limited guidance on diagnosis and management. This institutional neglect perpetuates the suffering of patients, who often experience disbelief and inadequate care from healthcare providers. Furthermore, the bureaucratic complexities within NIH impede the swift allocation of resources and collaboration among researchers specializing in IACCIs and disproportionately favor diseases with substantial private financial backing. Advocacy groups and patients have long called for a restructuring of NIH priorities and funding strategies to ensure equitable attention to ME/ CFS and
similar conditions.
