ME/CFS Research Foundation

What ME/CFS Research Foundation does

The ME/CFS Research Foundation is a Hamburg-based non-profit limited liability company (gemeinnützige GmbH) founded in early 2022 by entrepreneur Jörg Heydecke, a family member of an ME/CFS patient. Its sole mission is to promote and fund biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and the post-infectious Long COVID syndrome. The foundation operates entirely on private donations; the founder personally covers all administrative costs so that 100% of donations are passed through to research. As of December 2025, the foundation has raised over 4 million EUR cumulatively and co-funded 11 research projects, with 1.8 million EUR (44.7% of donations) directed into research and 1.93 million EUR held as reserves for future grants.

The foundation's core products and assets are: (1) the Research Funding Programme (a minimum 2 million EUR 2026 commitment for basic, translational, and therapeutic research); (2) the ME/CFS Research Register, a digital database at mrr.mecfs-research.org providing a systematic overview of ME/CFS projects, networks, publications, events, working groups, people, and organizations across six European countries; (3) the annual International ME/CFS Conference and public Symposium co-organized with Charité Fatigue Center Berlin; and (4) an extensive public engagement program across website, newsletter, and seven social platforms (Instagram, Facebook, LinkedIn, X, Threads, YouTube, TikTok). Funding decisions are vetted by an international Scientific Advisory Board of eight leading European ME/CFS researchers. The foundation's early seed funding helped establish the BMBF-backed National Clinical Study Group (NKSG), and it now participates in the federal 'National Decade Against Post-Infectious Diseases' (500 million EUR, 2026-2036).

The foundation's go-to-market is community-led and donation-driven. Donations are sourced from patients, families, friends, schools, networks, companies, and supporter-led initiatives, with a 5 EUR/month subscription and gift-donation options; large donors also provide indirect funding coordinated alongside direct giving. Its customer segments are the ME/CFS patient community (~650,000 patients in Germany, ~40 million worldwide, including ~80,000 children and adolescents) as ultimate beneficiaries, biomedical researchers at partner institutions as primary grant recipients, and policymakers, journalists, and medical professionals as secondary audiences.

Name

ME/CFS Research Foundation

Legal name

ME/CFS Research Foundation gGmbH

Website

https://mecfs-research.org

Company type

Private

Founded year

2022

Operating status

Operating

Headcount range

1–10 employees

Short description

The ME/CFS Research Foundation is a Hamburg non-profit founded in 2022 that funds biomedical ME/CFS and Long COVID research through private donations. It has raised over 4 million EUR cumulatively, co-funded 11 research projects, and operates a six-country Research Register.

Ownership category

akta.pro rank

Product category

Medical Research Funding

NAICS

Scientific Research and Development Services (5417), Research and Development in the Physical, Engineering, and Life Sciences (54171)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

Research & Science Grantmaking Foundations (BPAGAKAI), Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Biomedical research funding
• Disease research foundation
• Research grants
• Scientific networking
• Patient advocacy

Headquarters

HQ city

Hamburg

HQ country

Germany

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure, Others

Revenue model

1. Private donations: The foundation operates as a charitable organization (gGmbH) funded entirely through private donations. They receive both direct donations to the foundation and indirect funding coordinated with major donors. Administrative costs are fully covered by the founder Jörg Heydecke, ensuring 100% of donations go to research funding.
2. Indirect project funding: Large donors provide indirect funding coordinated with the foundation, channeled to selected research projects. This significantly increases direct funding capacity.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels13 records

Core offering

The ME/CFS Research Foundation is a non-profit organization (gGmbH) that promotes and funds biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID. It raises private donations and directs 100% of contributions toward biomedical research projects at academic and clinical institutions, while also providing researcher networking, transparency via the ME/CFS Research Register, and an annual International ME/CFS Conference.

Product overview

The ME/CFS Research Foundation is a non-profit organization that promotes and finances biomedical ME/CFS research. Its primary digital product is the ME/CFS Research Register - a systematic database platform that provides an overview of ME/CFS research landscape including projects, networks, publications, events, and researchers. The foundation also funds research projects, organizes conferences, and produces research reports. The ME/CFS Research Register serves as the core transparency platform for the organization's research networking activities.

Differentiator

Problem solved

Functional benefit

Brands

• ME/CFS Research Register: A systematic overview of the ME/CFS research landscape providing information on research projects, working groups, publications, events, and other details across multiple countries.

Products and services

• ME/CFS Research Register A systematic digital database platform providing an overview of the ME/CFS research landscape, including research projects, networks, publications, events, working groups, people, and organisations. Covers Germany, Austria, Switzerland, the Netherlands, Norway, and Iceland. Target users are researchers, clinicians, policymakers, and patient advocates.
• Research Funding Programme Grant programme that provides direct funding to biomedical ME/CFS research projects at universities and research institutions, primarily at Charité Berlin and other partner institutions in Germany. Selection is guided by an international Scientific Advisory Board of eight European ME/CFS researchers.
• International ME/CFS Conference & Symposium Annual hybrid scientific conference and public symposium on ME/CFS and Post-COVID research, co-organized with the Charité Fatigue Center and MRI Chronic Fatigue Center for Young People. Features English-language scientific presentations for researchers and a German-language symposium for the public, with recorded videos and presentations published online.

Quantifiable outcome

• Over 4 million EUR raised since founding in early 2022, with 1.8 million EUR (44.7%) invested in research
• +2 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core, flagship and minor.

• Deutsche Gesellschaft für ME/CFScoreStrategic or Co-development Partner · 1 January 2023German patient organization for ME/CFS. Partner in patient advocacy, public awareness, political engagement, and collaborative initiatives including the 'Arbeitsgruppe Patientenvertretung Nationale Dekade'.
• Charité Fatigue Centrum (Berlin)flagshipStrategic or Co-development Partner · 1 January 2022Primary research partner and co-organizer of annual International ME/CFS Conference. Site of biomarker research project funded by the foundation. Home to National Clinical Study Group (NKSG) and IMMME research network.
• Chronische Fatigue Centrum für junge Menschen (MCFC) at MRI/TUM MunichcoreStrategic or Co-development Partner · 1 January 2022Research partner focused on pediatric and adolescent ME/CFS. Site of ongoing foundation-funded research projects on biomarkers and disease mechanisms.
• Long COVID DeutschlandcoreStrategic or Co-development PartnerPatient organization for Long COVID. Partner in advocacy and collaborative initiatives for post-infectious diseases.
• Fatigatio e.V. – Bundesverband ME/CFScoreStrategic or Co-development PartnerFederal ME/CFS patient association. Partner in patient advocacy and collaborative initiatives.
• Open Medicine Foundation (USA)minorStrategic or Co-development PartnerInternational ME/CFS research foundation. Cooperation partner in the field of ME/CFS research funding.
• Lost Voices StiftungminorStrategic or Co-development PartnerGerman nonprofit foundation supporting ME/CFS research.
• We&ME Foundation (Austria)minorStrategic or Co-development PartnerAustrian foundation supporting ME/CFS research and awareness.
• Nationale Klinische Studiengruppe (NKSG)flagshipStrategic or Co-development PartnerBMBF-funded research network for clinical studies on ME/CFS and Post-COVID. Foundation provided early preparatory funding that contributed to NKSG establishment.
• IMMME Network (Immune Mechanisms of ME)coreStrategic or Co-development PartnerBMBF-funded collaborative research network investigating immune mechanisms of post-infectious ME/CFS.
• Risklayer (for prevalence and cost study)coreStrategic or Co-development PartnerResearch partner for study on prevalence and costs of Long COVID and ME/CFS in Germany, published May 2025.

Scale indicators7 records

Recent moves8 records

Expansion highlights6 records

Direct peers

• Invest in ME Research: UK/European charity funding ME/CFS biomedical research and organizing international research colloquia and conferences. Closely comparable in conference- and grant-making-driven operating model.
• The ME Association: UK-based charity funding ME/CFS research and providing patient information. Comparable in combining research funding with patient-facing support and awareness activity.
• We&ME Foundation: Austrian non-profit foundation supporting ME/CFS research and awareness. Already an established cooperation partner; directly comparable as a DACH-region ME/CFS research funder.
• Open Medicine Foundation: US-based non-profit funding biomedical ME/CFS and post-infectious disease research with a Scientific Advisory Board. Most structurally comparable peer; explicitly named as a cooperation partner of ME/CFS Research Foundation.
• Solve M.E. Long-standing US non-profit dedicated to ME/CFS research funding, advocacy, and patient support; operates research programs and the You + M.E. Registry. Directly comparable in mission to drive ME/CFS research and awareness.
• ME Research UK: UK-based charity that funds biomedical research into ME/CFS worldwide, including its own research portfolio and scientific publications. Comparable as a national-level, donor-funded biomedical ME/CFS research foundation.
• Lost Voices Stiftung: German non-profit foundation supporting ME/CFS patients and research. Directly comparable German peer; named cooperation partner with overlapping advocacy and funding mandate.

Emerging players

• Deutsche Gesellschaft für ME/CFS: German patient and scientific society for ME/CFS, focused on advocacy and policy engagement. Named cooperation partner; comparable ecosystem participant but more advocacy- than funding-led.

Regional players

• Emerge Australia: Australian national organization providing ME/CFS research advocacy, information, and support. Comparable mission and patient-research focus but operates in a different geography (Australia vs. DACH/Nordics).

Broad incumbents

• Wellcome Trust: Large UK-based global charitable foundation funding biomedical and health research at multibillion-EUR scale. Broad incumbent in the same biomedical research funding category; far larger portfolio but comparable donor-funded model.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/MECFSResearch
• YouTubeyoutube.com/@MECFSResearchFoundation
• Facebookfacebook.com/profile.php
• LinkedInlinkedin.com/company/mecfs-research-foundation
• Instagraminstagram.com/mecfs_research
• TikToktiktok.com/@mecfsresearchfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ME/CFS Research Foundation