ME/CFS Research
Research is the path towards solution.
More ME/CFS research will enable better diagnostics and one day causal therapies. Along the way, more medical knowledge will emerge and enable better recognition and care for patients by the medical and social systems.
No adequate research, diagnosis or treatment – until now...
The problem: there is far too little ME/CFS research – too little in relation to the number of patients and the severity of the disease. ME/CFS and Long COVID cause enormous societal costs every year (over €63 billion). Nevertheless, ME/CFS research is decades behind compared to similarly widespread diseases. (external link).
More than 650,000 people living with ME/CFS in Germany (according to our study on the prevalence and societal costs of ME/CFS and Long COVID)therefore do not receive adequate medical and social care. Many doctors are largely unaware of the disease. As a result, patients usually experience a frustrating and fruitless "odyssey" through the medical and social system. They are regularly diagnosed, treated and cared for incorrectly and far too often not at all. This must change!
Research is the way to sustainably improve the situation for patients
The majority of ME/CFS patients receive inadequate care. This is partly because the medical and social costs would be enormous. Appropriate expenditure on research is comparatively manageable and could lead to therapies within a few years. This would make adequate care much more affordable or even unnecessary. We are committed to this cause.
Our goal: We want to initiate more biomedical basic and clinical research – funded by donations and for the public good. Privately funded projects are often the first step in testing new approaches. We support projects, connect researchers and make ME/CFS research transparent. This brings progress – step by step.
For a few years now, ME/CFS research has also been publicly funded. However, the pharmaceutical industry and established institutions have so far shown little involvement. Budgets remain small and the structures and projects that have been created are not sustainably financed. Our focus is therefore on biomedical research projects for which public funding is not (yet) available or is insufficient.
World’s leading experts are calling for more investments in research and drug development
On 1 September 2025, more than 65 researchers and medical professionals from 14 countries published the International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID. The experts call for greater global cooperation to expand biomedical research and advance the development of curative treatments.
The Declaration calls on governments and international bodies to prioritise research funding on both diseases and outlines the need for pharmaceutical and biotechnology companies to be actively engaged and incentivised to invest in research and drug development.
How do we support ME/CFS research?
We fund biomedical research focussing on basic and clinical therapy research in Germany (later also in other EU countries). There are already good approaches and globally recognised experts in this field. We support research through:
- Funding of networking and exchange, e.g. the International ME/CFS Conference (Berlin 2023 and 2025).
- Making research transparent, e.g. with:
- ME/CFS Symposium 2025 – Research in Germany (Berlin) 2023 and 2025)
- ME/CFS Research Register (for experts and interested parties)
- ME/CFS Research Update (for patients, relatives, the general public).
- Funding of research projects e.g. in Berlin and Munich. We support individual researchers, the establishment of fundamental ME/CFS research structures at universities, and doctoral scholarships.
Project funding is based on scientific quality criteria, such as those set out in the "Guidelines to research and care for ME/CFS and Post-COVID-Syndrome. Our funding decisions are supported by an international scientific advisory board. Further details on applying for project funding will be available here shortly.
Events on ME/CFS research and related topics (including from other organisations).
Overview of ME/CFS research internationally: projects, researchers, working groups, publications, etc.
European experts in ME/CFS research who advise us and support our work.
Unsere Projektförderungen
Private funding initiates research initiatives that open doors to more public funding.
ME/CFS research in Germany (and internationally) is still dramatically underfunded. As a result, many research projects cannot be realised. For example, there is a lack of basic research that can uncover the disease mechanism and thus open the door to possible treatments. These mostly smaller projects can easily be financed with private funds.
Large clinical research projects or the establishment of research centres require large budgets that can only be provided publicly in the long term. Donation-based partial funding at the beginning can provide decisive impetus here, e.g. to emphasise the relevance of medical studies or research directions. Our commitment to improving the research situation complements the work of the organisations concerned in the areas of policy information and further training for doctors.
FAQ: Questions and data on ME/CFS research
Please click on the questions for answers and more information.
In February 2024, the ME/CFS Research Foundation launched the ME/CFS Research Register (beta) – a systematic overview of the research landscape on ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). The register provides an overview of the most important research work - from current projects, publications and working groups to scientific events such as conferences.
The scope of the registry (currently Germany and Austria are covered) will be expanded to include other countries in the future. In addition, the ME/CFS Research Foundation will regularly publish analyses and reports on ME/CFS research.
With the ME/CFS Research Update , we report on ongoing research to give patients, relatives and interested parties an insight into the current research landscape.
We maintain an overview of conferences and other events on ME/CFS research and related topics.
All information and links:
- ME/CFS Research Update: https://mecfs-research.org/en/researchupdate/
- Announcement ME/CFS Research Register: https://mecfs-research.org/en/mrr/
– Direkt zum ME/CFS Research Register: https://mrr.mecfsresearch.org/
– Übersicht aktueller Konferenzen und Veranstaltungen zur ME/CFS Forschung: https://mecfs-research.org/events/
ME/CFS Research Foundation exclusively funds scientific, evidence-based, biomedical research on ME/CFS and Long Covid. Our project funding is based on scientific quality criteria, such as those proposed in the "Guidelines to research and care for ME/CFS and Post-COVID-Syndrome".
The international Scientific Advisory Board of the ME/CFS Research Foundation ensures compliance with these quality criteria.
The ME/CFS Research Foundation exclusively promotes scientific, evidence-based, biomedical research on ME/CFS and Long Covid. We focus on basic and clinical therapy research in Germany (later also in other EU countries). We report on the projects we fund under News & Events and in our newsletter (subscribe here).
Project funding is based on scientific quality criteria, such as those proposed in the "Guidelines to research and care for ME/CFS and Post-COVID-Syndrome". Our funding decisions are supported by an international scientific advisory board.
Zweckgebundene Spenden werden den entsprechenden Projekten zugeleitet (vgl. die Frage “Ich möchte eine/n bestimmten Wissenschaftler:In mit meiner Spende unterstützen” in our Donations FAQ).
Yes, we are not only striving for the exchange of information between researchers on their ongoing studies, but are also working on a network of researchers that goes beyond this. Some of the information exchanged informally within the framework of ongoing projects will only be made public later. We strive for maximum transparency.
We regularly publish updates on our work, e.g. on our website in the News & Events section, in our activity report and in our newsletter (subscribe here). We will also publish the results of our funded research projects there.
Information on the timing of all ME/CFS research projects can be found in the ME/CFS Research Register , for example. For clinical trials in Germany and Austria, we show the timelines in our ME/CFS Research Update.
Yes, we only fund scientists who are already familiar with the international state of research on ME/CFS. Our international scientific advisory board advises us on this and we also exchange ideas with other researchers internationally.
In addition, we also promote the international networking of scientists ourselves, e.g. with conferences or the ME/CFS Research Register.
Yes! The ME/CFS Research Foundation funds and organises, for example, with the Charité Fatigue Centre, the International ME/CFS Conference (target audience: medical professionals and scientists, in Berlin 2023 and 2025). The conference will take place again in 2026.
In addition, the ME/CFS Symposium – Research in Germany provides information to interested medical professionals, patients and the general public about new projects in Germany (Berlin 2023 and 2025). The symposium will also take place again in 2026.
We organise informal events for researchers to exchange ideas (not always with public reporting).
Training events for doctors in private practice are not planned as part of our activities. However, these are regularly offered, for example, by the German Association for ME/CFS or by the Charité Fatigue Center (Charité Fatigue Zentrum) .
Unfortunately, no. We are in close contact with medical doctors and researchers, but cannot and must not recommend any particular medical treatments or medical doctors. The Charité Fatigue Centre offers information for patients and an overview of ME/CFS support groups and patient organisations in Germany. Information on therapy approaches and ME/CFS research is available in layman's terms on the excellent blog Healthrising.org zu finden.
An overview of additional ‘Resources for Patients’ on our website is planned for mid-2025.
We regularly add to the list of FAQs. If you have a question that has not yet been asked or answered adequately here, please simply send us an e-mail: FAQ@mecfs-research.org We will then comment on your question as soon as possible.
More information / FAQ on other topics can be found on the respective topic pages (at the bottom):
