On 3rd June 2024, Walter J. Koroshetz, M.D issued a Director’s message on ‘Advancing Research on ME/CFS‘. Dr Koroshetz is the Director of the National Institute of Neurological Disorders and Stroke (NINDS) – one of the 27 Institutes and Centres which are tthe constituent elements of the USA’s National Institutes of Health (NIH). ME/CFS research falls under the wing of NINDS.
His message concerned the next stage for future research priorities and actions on ME/CFS identified by the ME/CFS Research Roadmap adopted by the National Advisory Neurological Disorders and Stroke (NANDS) Council on 15th May 2024. The 59 page Roadmap laid out 27 specific gaps in ME/CFS knowledge/research followed by strategies to defeat these. The Roadmap building on results of the Working Group of Council which identified 8 research prioity areas including chronic infections, immune system, and genomics/genetic susceptibility and held open webinars gathereing views and evidence from the entire ME/CFS community, including researchers, clinicians, and people affected by ME/CFS.
The next step in the process, as Dr Koroshetz identified, being for the NIH, and the Trans-NIH ME/CFS Working Group, to review the Roadmap and identify how best to implement the findings.
He hailed as “exciting news” the NIH Intramural Study on ME/CFS published results in Nature Communications. which, in a small number of persons with post-infectious ME/CFS (PI-ME/CFS), revealed a number of biological changes in people with the condition that warrant further exploration in larger and varied cohorts.
Many, but not all, cases of ME/CFS develop following an infection. Due to the substantial number of people reporting ongoing symptoms after COVID-19, including people with Long COVID, there is now greater awareness of post-infection conditions and their impact. Long COVID and ME/CFS have many overlapping symptoms, and there is the expectation that research will uncover similarities in the biological mechanisms underlying ME/CFS, Long COVID, and other infection-associated chronic conditions. The RECOVER (Researching COVID to Enhance Recovery) Initiative, which NINDS leads along with the National Heart, Lung, and Blood Institute and the National Institute of Allergy and Infectious Diseases, is NIH’s largest research program dedicated to understanding, diagnosing, preventing, and treating Long COVID. RECOVER clinical research sites have directly enrolled over 30,000 persons, clinical trials testing 13 treatments across eight clinical trials are underway, and tissues from over 120 autopsy cases are being analyzed.
A number of factors, including the lack of a research effort that is scaled sufficiently to meet the public health problem, has led to understandable frustration in the ME/CFS community. We hope that this is a turning point for ME/CFS research. New findings from the intramural ME/CFS study and from additional NIH-funded studies, the development of the Research Roadmap, and research focused on infection-associated chronic conditions such as Long COVID, should move us closer to understanding ME/CFS and identifying treatments to help those affected by the disease.
