New resources for large-scale ME/CFS research

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and severe disease that, according to the CDC, affects up to 2.5 million Americans, many of whom have not been diagnosed. This debilitating disease causes pain, cognitive difficulties, severe fatigue that does not improve with rest, and an increase in symptoms following physical or mental exertion (called post-exertional malaise). The disease can have widespread effects throughout the body including in the immune, metabolic, cardiovascular, gastrointestinal, and nervous systems. Moreover, for the past several months similar symptoms have been reported in people who were infected with COVID-19. Although many people fully recover from the novel coronavirus, there is a subset of individuals who continue to experience severe and life-changing symptoms on a long-term basis, a condition that has been referred to as “Long COVID syndrome.” The knowledge gained through research on Long COVID syndrome may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases. For more, please read NINDS Deputy Director Dr. Nina Schor’s post on The Schor Line.

Active NINDS efforts are underway to seek a better understanding of ME/CFS in order to treat—and ultimately prevent—this disease. Across biomedical research, innovative tools and methods are being developed to help investigators mine and analyze clinical data and biospecimens, looking for patterns and potential answers to important questions about the underlying causes of diseases. To facilitate these efforts, just earlier this week, the National Advisory Neurological Disorders and Stroke (NANDS) Council approved two concepts to continue support for ME/CFS collaborative research centers and a data management coordinating center. Moreover, I am glad to announce two new research tools, mapMECFS and searchMECFS, designed to advance ME/CFS research. These tools invite investigators to access and share data and biospecimens collected from people with ME/CFS who have volunteered to participate in clinical research. Both were developed with NINDS funding (U24-NS-105535) to RTI International, the Data Management and Coordinating Center for the NIH-funded ME/CFS Collaborative Research Centers (CRCs) Network.

The development of both of these tools aligns with the findings of the NANDS Council Working Group for ME/CFS Research. In their report(pdf, 669 KB) (pdf, 653 kb), they noted the need for data sharing, centralized databases, and biobanks for promoting communication between ME/CFS clinicians and researchers, as well as helping to advance progress in ME/CFS research. Scientists from all disciplines, including those who are studying the long-term effects of COVID-19, are invited to explore mapMECFS and searchMECFS to see how these tools can move their research projects forward.

The first tool, mapMECFS, is an online data sharing platform that allows researchers to access results from multi-omic studies, which look within and across whole systems like the genome (all of a person’s genetic material) or proteome (all of the proteins made in a cell or tissue type). These types of studies enable exploration of complex experimental results, connecting datasets to offer new opportunities for discovery for ME/CFS researchers. The mapMECFS platform was initially developed to support the ME/CFS Network CRCs, which are using a variety of approaches including microbiome screens, RNA sequencing, mitochondrial assays, and metabolomic assays, to identify potential biomarkers for ME/CFS. The new platform allows researchers to search datasets across multiple studies, quickly compare results for specific molecules or markers of interest and download relevant data for use in subsequent exploration or validation studies. Additionally, mapMECFS encourages and facilitates sharing of new data by capturing descriptive information about available data (called metadata) to make results easier to find.&

The second new tool, searchMECFS, is an online interactive search tool that allows researchers to find biospecimens from ME/CFS studies that are available for research purposes. Researchers can identify and request biospecimens—such as DNA, RNA, urine, plasma, and peripheral blood cells—based on specific demographic and clinical characteristics. The initial cohort providing ME/CFS biospecimens was the Chronic Fatigue Initiative, a research study supported by the Hutchins Family Foundation that collected biospecimens and associated data from 201 individuals with ME/CFS and 200 matched controls. Additional cohort biospecimens and datasets will be available in the future. The specimens are housed at BioSEND, NINDS’ biospecimen repository at Indiana University in Bloomington, and the data are hosted by RTI International. Researchers who access biospecimens through searchMECFS will be able to upload completed assay results into mapMECFS to make the information widely available to other investigators.

We encourage investigators from a variety of disciplines and interests to use these tools to pursue new research avenues. Our sincere hope is that these ME/CFS tools will also benefit the larger research community. It will take a large-scale effort – from all of us – to help find critical answers to this devastating disease.