ME/CFS Research
Research is the path towards a 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.
There is no adequate research, diagnosis, therapy, to-date
The problem: there is far too little ME/CFS research - both in terms of the number of patients affected, the severity of the disease and, above all compared to similarly widespread diseases.
Over 500,000 ME/CFS patients (and their relatives) therefore do not receive adequate medical and social care. Even 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
Our goal: We want to initiate more basic and clinical biomedical research funded by donations. Privately funded initial steps are often needed to test new approaches. More research projects and more researchers will get the ball rolling. We support this so that public and sustainable ME/CFS research funding can be provided by politicians and established institutions on an appropriate scale in the medium term.
The majority of ME/CFS patients are inadequately cared for. This is also because the medical and social costs would be enormous. Reasonable expenditure on research is manageable and could make therapies possible in just a few years. This would make appropriate care much more affordable or even superfluous.
How do we support ME/CFS research?
We promote 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:
- Promotion of networking and exchange, e.g. in the form of the international ME/CFS conference (Berlin, 2023).
- Making research transparent, e.g. with the ME/CFS Research Register (for experts and interested parties), the ME/CFS Research Update (for patients, relatives and the public) or the ME/CFS Symposium (Berlin, 2023).
- Promotion of research projects , e.g. in Berlin and Munich. Dabei unterstützen wir einzelne Forschende, den Aufbau grundlegender ME/CFS Forschungsstrukturen an Universitäten, oder auch Doktoranden-Stipendien.
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“ vorgeschlagen wurden. Unsere Förder-Entscheidungen unterstützt ein international scientific advisory board. We will present further details on applying for project funding here in mid-2024.
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.
Questions about ME/CFS research (FAQ)
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/
- Directly to the ME/CFS Research Register (beta): 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.
Earmarked donations are channelled to the relevant projects (see the question "I would like to support a specific scientist with my donation" 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, for example, the ME/CFS Research Foundation funded and supported the International ME/CFS Research Conference in May 2023 (target group: medical professionals and scientists) and the complementary ME/CFS Symposium on Research and Care at the Charité Fatigue Center at the Charité Fatigue Centre (target group: patients, relatives, interested members of the public). Further events and formats are being planned.
If required, we will also organise or support further congresses and informal exchange events between funded scientists. The extent to which these events will be open to the public must be considered on a case-by-case basis. Information on this will be provided on our website in due course.
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 Society 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 (English language only). We intend to build up a range of other "resources" on our website in the near future.
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.
Further information / FAQ on other topics can be found on the respective topic pages (at the bottom):
English 
German 