National Foundation for ME/CFS Researchnationalmecfs.org

A research and education foundation, being established

ME/CFS affects 1.3% of American adults. Research funding does not reflect that.

The National Foundation for ME/CFS Research is being established to produce and publish rigorous evidence on myalgic encephalomyelitis/chronic fatigue syndrome: what the disease costs, how research funding compares with its burden, and how conditions found in ME/CFS can be measured. We make that evidence available to patients, clinicians, researchers and the public, including those who decide how research money is spent.

What we are working on Contact

Today

In 2021–2022 1.3% of US adults had been told by a doctor or other health professional they had ME/CFS and still had it National Health Interview Survey, 57,133 adults; self-reported diagnosis [1]
NIH research spending on ME/CFS, FY2025 $12M after $13M in each of FY2022, FY2023 and FY2024 NIH RePORT categorical spending, rounded, as categorised by NIH [2]

If funding matched disease burden

NIH research spending on ME/CFS, per year $472–600M the published estimate of what would be commensurate with similarly burdensome diseases: roughly 40 to 50 times the FY2025 level Mirin, Dimmock & Jason, 2022, modelled estimate [3]
NIH research spending on ME/CFS, $ million a year
FY2025, actual 12 Matched to burden published estimate 472 600
Sources: NIH RePORT RCDC, FY2025, rounded [2]; Mirin, Dimmock & Jason 2022 [3]. The lighter segment is the range between the estimate's low and high values.

What we are working on

Two projects, before the foundation opens its doors.

Current work

The foundation is not yet open. Two pieces of work are under way ahead of launch. Results from both will be published here once they have been through independent review.

The economic cost of ME/CFS and Long COVID in the United States

In progress

Anyone deciding how research money is spent asks two questions: what does this disease cost, and is the research money proportionate? Published US answers differ several-fold because they rest on different case definitions and costing methods. We are building a multi-year analysis of the cost of ME/CFS and Long COVID, and a comparison of research funding against disease burden across many conditions, on a basis that can be defended line by line.

Measuring craniocervical instability

In progress

Craniocervical instability (CCI) is excessive movement between the skull and the top two bones of the neck, usually because the ligaments that hold that joint are lax or damaged. It is suspected in some people with ME/CFS and is rarely studied, in part because there is no agreed, reproducible way to measure it. We are supporting work on an objective measurement of craniocervical movement from standard imaging, as the step that has to come before any question about treatment.

For patients: New to CCI? Start here, a step-by-step guide to imaging, diagnosis and treatment, with providers by location.

About

Washington, DC.

A small foundation with one job

The National Foundation for ME/CFS Research is being established by Lukas Barth, a former McKinsey consultant with an MBA from UC Berkeley's Haas School of Business. It is based in Washington, DC. Its purpose is to advance research and education on ME/CFS, with a focus on the economics of the disease and on measurement questions that have gone unstudied. Patient organisations, clinics and research charities already do essential work; rigorous, public evidence on what the disease costs and what research funding would be proportionate to it is the piece we are building.

Structure

  • Organised as a US nonprofit corporation. An application for recognition as a 501(c)(3) public charity has been filed with the IRS; this page will say when it is granted.
  • Board of directors and scientific advisers: to be announced.
  • Governing documents, annual filings and funding sources will be published here as they exist.

Contact

Researchers, clinicians, policymakers, journalists.

Write to us

If you run a research group, work in health policy, report on it, or want to know more about either project, write to us. We answer every message.

[email protected]

Sources

Every figure on this page, traced.

Sources

  1. Vahratian A, Lin JS, Bertolli J, Unger ER. Myalgic encephalomyelitis/chronic fatigue syndrome in adults: United States, 2021–2022. NCHS Data Brief no. 488. Hyattsville, MD: National Center for Health Statistics; December 2023. National Health Interview Survey, 57,133 adults; ME/CFS defined as a yes to both NHIS questions: ever told by a doctor or other health professional that you had CFS or ME, and still have it. cdc.gov/nchs/products/databriefs/db488.htm
  2. National Institutes of Health, RePORT. Funding for Various Research, Condition, and Disease Categories (RCDC). Table published 23 June 2026; FY2022 to FY2025 annual support levels, dollars in millions and rounded. NIH describes category levels as its best estimates based on the category definitions; categories are not mutually exclusive. Category "Chronic Fatigue Syndrome (ME/CFS)": FY2022 $13M, FY2023 $13M, FY2024 $13M, FY2025 $12M. report.nih.gov/funding/categorical-spending
  3. Mirin AA, Dimmock ME, Jason LA. Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications. Fatigue: Biomedicine, Health & Behavior. 2022. The authors estimate that NIH funding "would need to expand from the current amount of $15 million per year to approximately $472–$600 million annually, up to a 40-fold increase, to be commensurate with that of similarly burdensome diseases." A modelled estimate, not a measurement; the multiple shown on this page (40 to 50 times) is recomputed against the FY2025 figure of $12M. doi.org/10.1080/21641846.2022.2062169