NIH funding for ME/CFS keeps falling

The National Institutes of Health (NIH) in the United States is spending less money to support research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects. Even if we include funding for Ian Lipkin’s team at Columbia University (which did not appear in the database), the funding still decreased by 7% to $ 9.4 million.

Five ME/CFS projects are planned to end in 2026, hinting that the decline will likely continue next year. The influx of new grants is currently too low to reverse the downward trend. In 2025, there were only two new NIH projects on ME/CFS.

Overview of NIH studies on ME/CFS

While European countries such as the Netherlands and Germany are increasing their investments in ME/CFS research, the US appears stuck in an opposite trend. Since the number of collaborative research centers has been reduced from three to two, NIH funding for ME/CFS is in a downward spiral.

In the table below, we’ve made an overview of all funded ME/CFS projects in 2025 using the online NIH RePORTER tool.

TitleProject NumberProject LeaderAwardee OrganizationFunding in US dollars
Cornell ME/CFS Collaborative Research Center Administrative Core5U54AI178855-08HANSON, MAUREENCORNELL UNIVERSITY324,700
Research Core5U54AI178855-08GRENIER, JENNIFER KCORNELL UNIVERSITY162,489
Dissecting myogenic-endothelial-immune interactomes in human ME/CFS skeletal muscles5U54AI178855-08COSGROVE, BENJAMIN DAVIDCORNELL UNIVERSITY402,279
Immune dysfunction in ME/CFS5U54AI178855-08GRIMSON, ANDREW WCORNELL UNIVERSITY487,089
Circulating signals of ME/CFS5U54AI178855-08HANSON, MAUREEN REBECCACORNELL UNIVERSITY526,665
Mechanisms of Cognitive Control Impairment in ME/CFS and PASC-ME/CFS5R01NS133905-03ERYILMAZ, H HAMDI AND VANELZAKKER, MICHAEL BMASSACHUSETTS GENERAL HOSPITAL476,515
Long COVID as a putative subtype of chronic fatigue syndrome5R01AI170850-04SAXENA, RICHAMASSACHUSETTS GENERAL HOSPITAL349,946
(supplement) Long COVID as a putative subtype of chronic fatigue syndrome3R01AI170850-04S1 SAXENA, RICHAMASSACHUSETTS GENERAL HOSPITAL412,109
Develop a novel red blood cell-based microfluidic approach to assess and diagnose ME/CFS5R21AI175960-02WAN, JIANDIUNIVERSITY OF CALIFORNIA AT DAVIS182,069
Cerebral Energy Metabolism in ME/CFS with and without PASC5R01NS136806-02XU, XIANGICAHN SCHOOL OF MEDICINE AT MOUNT SINAI638,237
Human Herpesvirus 6B in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome pathogenesis: temporal analysis of viral reactivation and immunity to elucidate cause vs effect5R01AI170839-04LACERDA, ELIANALONDON SCH/HYGIENE & TROPICAL MEDICINE529,473
Altered T Cell Responses in Myalgic Enchephalomeylitis/Chronic Fatigue Syndrome (ME/CFS)5R01AI159314-05SELIN, LIISA KAARINAUNIV OF MASSACHUSETTS MED SCH WORCESTER474,267
DMCC for ME/CFS CCR: Recompete 20225U24NS105535-08CARNES, MEGANRESEARCH TRIANGLE INSTITUTE1,043,472
DMCC for ME/CFS: Recompete 2022 + CDE Admin Supplement3U24NS105535-07S1 CARNES, MEGANRESEARCH TRIANGLE INSTITUTE63,932
Development of humanized microbiota mouse models of ME/CFS5R21AI183042-02LOMBARDI, VINCENTUNIVERSITY OF NEVADA RENO182,100
Mechanistic Assessment of N-Acetylcysteine as an Antioxidant Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Through Dose Response and Treatment Target Engagement5R01NS116887-05SHUNGU, DIKOMAWEILL MEDICAL COLL OF CORNELL UNIV524,792
MSC exosomes as probes for ME/CSF immune cell dysfunction1R21AI187895-01BELJANSKI, VLADIMIRNOVA SOUTHEASTERN UNIVERSITY224,070
Mechanophenotyping RBC subpopulations in ME/CFS1R15HL177762-01RAMASUBRAMANIAN, ANAND KSAN JOSE STATE UNIVERSITY432,431
TOTAL7,436,635

The missing funding for Columbia

The total amount for 2025 was $ 7,436,635. Notably missing from this overview, however, is the ME/CFS center at Columbia, led by Prof. Ian Lipkin. Their funding was successfully renewed for multiple years, but then, political chaos frustrated their plans.

Columbia was hit by funding cuts after the Trump administration claimed that the university failed to crack down on antisemitism. The ME/CFS program was one of the casualties.

Luckily, Prof. Lipkin has since announced that their funding has been restored, although with some changes in their research plans (for more info, see our summary of Lipkin’s conversation with David Tuller here). However, even if we include the grants for the Columbia Center (in 2024, they received roughly $2 million), NIH funding still decreased in 2025, from $10,109,836 to $9,404,777.

Two new studies

Most studies already received funding in 2024 and were summarized in our overview from last year. This year, there were only two new NIH projects on ME/CFS, totaling a funding amount of $656,501.

One study is led by Associate Professor Vladimir Beljanski at Nova Southeastern University (the same institute where Nancy Klimas works). It focuses on tiny vesicles produced by cells in the bone marrow called “bone marrow mesenchymal stromal cell (BMMSC)-derived exosomes.” These exosomes are important in the communication between cells and play a role in modulating the immune system. The authors suspect that this type of cellular signaling may be abnormal in ME/CFS. Beljan and his team will isolate blood cells from patients and expose them to these BMMSC-exosomes. Afterwards, they will test mRNA gene expression and mitochondrial function. The project is funded by an R21 grant, intended for early-stage, innovative ideas. Its funding for 2025 was $224,070. In 2026, it will receive another $192,500, but then the project ends with no option of renewal.

The other project is led by Associate Professor Ramasubramanian at San José State University.  It’s focused on red blood cell deformability. Ramasubramanian already published a brief paper on this topic with Ron Davis in 2019. Using a microfluidic device, they showed that red blood cells from ME/CFS patients are stiffer than those from healthy controls. This makes it harder to pass through small spaces such as tiny blood vessels. The new grant will explore this further. The San José researchers hypothesize that stiff blood cells may not easily flow into our smallest blood vessels, preventing oxygen from reaching the muscles efficiently. The researchers also suspect that oxidative stress may be the reason why the red blood cells of patients are less flexible. This project is funded by a Research Enhancement Award (R15), which is specially designed for smaller-scale research projects that heavily involve students. It received $432,431 in 2025 and will continue to receive funds until 2027.

Five projects will end next year

During the current Trump administration, the NIH has made profound changes in how funding is allocated. The budget end date of many projects, for example, has been reset to 2026, making it more uncertain if long-term studies will receive funding in future years. The ME/CFS projects at the Cornell Center, for example, were expected to continue until 2028, but funding is only secured until March 2026. Although this appears to be a general measure that affects almost all NIH studies, it does increase the risk that ME/CFS funding might drop sharply next year.

Even if we ignore this issue and look at the project (not the budget) end date, then we see that 5 ME/CFS projects are planned to stop in 2026. This is true for Lisa Selin’s long-term study on T-cells, Vincent Lombardi’s microbiota mouse model, Dikoma Shungu’s study on N-Acetylcysteine, Jandi Wan’s research on red blood cells, and the new R21 grant on BMMSC-derived exosomes. These totaled around $1.5 million in 2025. That’s the amount of funding that will disappear next year. It remains to be seen if there are sufficiently new ME/CFS grants to compensate for this loss.

Different figures

The NIH uses different figures in its overview of funding per disease category. For 2024, for example, it lists $13 million for ME/CFS research, rather than the $10.1 million that we calculated by adding up all the grants that focus on ME/CFS. In the past, however, the NIH has included studies in its list of funding for ME/CFS research that aren’t really about ME/CFS. For 2025, the NIH has not published an amount or overview of ME/CFS studies yet.

There’s some ambiguity on which projects to include (‘is it sufficiently about ME/CFS or not?’), and we may have missed one, but the overall trend seems clear.

Conclusion

The level of NIH funding for ME/CFS was already unacceptably low. To be commensurate with its disease burden, NIH funding would need to increase roughly 14-fold. Seeing it decrease even more, year after year, feels very unjust for the millions affected by this horrible illness.

Luckily, there are charities such as Open Medicine Foundation (OMF), Solve ME/CFS Initiative, and Polybio that invest substantial amounts in ME/CFS research. But it shouldn’t be up to charities alone to fund research. Despite all the hard hits it received during this administration, the NIH remains the largest public funder of biomedical research worldwide with a budget of $ 48 billion. In order for ME/CFS to flourish, it needs to significantly up its game.

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