Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease that impacts millions of people worldwide. The disease affects many body systems including the nervous, cardiovascular, and immune systems, and it can exact a tragic toll, in some cases leading affected persons to become bed-bound for long periods. Although research has provided insights into the biological abnormalities associated with the disease, the underlying cause(s) remain unknown, and there are no diagnostic tests or specific FDA-approved treatments for ME/CFS. Despite these challenges, pioneers in ME/CFS research persist in their quest to understand ME/CFS and bring hope for progress to come.
To guide future research on ME/CFS that will lead to better understanding and treatment, NINDS charged a working group of the National Advisory Neurological Disorders and Stroke (NANDS) Council to develop an ME/CFS Research Roadmap. On May 15, 2024, during the open session of its 223rd meeting, the NANDS Council voted to accept the working group's final report.
The Roadmap outlines eight research priority areas that the entire ME/CFS community, including researchers, clinicians, and people affected by ME/CFS, can refer to and work to address: 1) chronic infections, 2) immune system, 3) nervous system, 4) cardiovascular circulation, 5) metabolism, 6) physiology, 7) less studied pathologies, and 8) genomics/genetic susceptibility. For each of these topics, the Working Group of Council organized webinars focused on what we know, what we don’t know, and what is needed to move the field towards clinical trials. The webinars were open to the public, and recordings are available on the NINDS events webpage.
From the outset, the roadmap process put heavy emphasis on the perspectives from people with lived experience. NINDS issued a call for self-nominations from individuals who would be interested in participating, including people living with the disease, caregivers or care partners, family members, and leaders of ME/CFS non-profit advocacy organizations. We invited five individuals to serve on the Working Group of Council, and 21 other individuals with lived experience participated in webinar planning groups. In addition, we welcomed input from the ME/CFS community and the general public throughout the process and hosted a webinar in March that provided an overview of the Roadmap and invited questions and comments from attendees. We are grateful for all the time and input that public participants shared with us to make the Roadmap stronger and more meaningful.
The Roadmap calls for collaborations among advocacy organizations, government agencies, people with lived ME/CFS experience, industry partners, researchers, clinicians, and other interested groups to effectively advance the field to clinical trials. As a next step here at NIH, the Trans-NIH ME/CFS Working Group, established in 1999 with representatives from NIH institutes, centers, and offices, will review the Roadmap and identify how best to implement research to move the suggestions forward.
In other exciting news, in February, the NIH Intramural Study on ME/CFS published results in Nature Communications. This intensive study of 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. On May 2, 2024, NIH held a symposium to present the results to the ME/CFS community and the public. By convening the ME/CFS intramural research team, study participants, and ME/CFS clinicians and researchers, the symposium served as an important platform for the exchange of knowledge, innovative ideas, and scientific findings related to PI-ME/CFS. The hybrid meeting was recorded and is available for viewing.
Data from the NIH Intramural Study on ME/CFS are available on mapMECFS, an interactive data portal providing access to research results across studies on ME/CFS. Researchers who would like access to the data from this and other studies should request an account.
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.