Research will bring the 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: the only way to sustainably improve the situation
Our goal: We want to initiate more basic biomedical and drug research funded by donations. Privately financed initial steps are often needed to test new procedures. More research projects and more researchers will get the ball rolling. We support this so that in the medium term, public and sustainable ME/CFS research funding can be provided by politicians and established institutions on an appropriate scale.
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.
Private Anstoßfinanzierung von Forschung öffnet Türen zu staatlicher Finanzierung.
Die ME/CFS-Forschung ist in Deutschland (und international) dramatisch unterfinanziert. Viele Forschungsvorhaben werden deshalb nicht realisiert. Es fehlt nicht nur an Therapie-, sondern bereits an Grundlagenforschung, die den Krankheitsmechanismus aufdecken und damit das Tor für mögliche Behandlungen eröffnen kann. Dafür sind Budgets im 5-6 stelligen Bereich erforderlich – mit privaten Mitteln durchaus finanzierbar.
Große klinische Forschungsprojekte oder die Einrichtung von Forschungszentren benötigt staatliche Hilfe mit mehreren Millionen EUR Budgets. Eine private Teilfinanzierung zum Beginn kann hier entscheidende Anstösse liefern, z.B. um die Relevanz einer bestimmten medizinischen Studie oder Forschungsrichtung zu verdeutlichen. Ergänzend zu den Engagements der Betroffenenorganisationen in den Bereichen Politik und Ärzte-Fortbildung arbeiten wir an der effektiven Verbesserung der Forschungssituation.
How do we support ME/CFS research?
The ME/CFS Research Foundation will promote evidence-based, scientific, biomedical research. Our focus is on university research, initially in Germany. This is because there are already good approaches and globally recognised experts here. Later, we will also become active in other EU countries.
We support and fund research in various forms: individual projects or researchers, the establishment of basic ME/CFS research structures at universities, or doctoral scholarships (more on this in our research funding strategy).
When selecting projects and institutions, we are guided by scientific quality criteria, such as those set out in the "Guide to research and care for ME/CFS and Post-COVID-Syndrome", proposed by the patient organisations German Association for ME/CFS (Deutsche Gesellschaft für ME/CFS) and Long COVID Germany in consultation with other organisations including ME/CFS Research Foundation.
Concrete funding decisions are supported by our international scientific advisory board . We will present the process for applying for our project funding here in mid-2024.
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 Forschungs-Update berichten wir über die laufende Forschung, um Betroffenen, Angehörigen und Interessierten einen Einblick in die aktuelle Forschungslandschaft zu geben.
All information and links:
– ME/CFS Forschungs-Update: https://mecfs-research.org/researchupdate/
– Ankündigung ME/CFS Research Register: https://mecfs-research.org/en/mrr/
– Direkt zum ME/CFS Research Register (beta): https://mrr.mecfsresearch.org/
The ME/CFS Research Foundation exclusively promotes scientific, evidence-based, biomedical research on ME/CFS and Long Covid. Projects and institutes are selected on the basis of quality criteria, which are based, for example, on the "National Action Plan for ME/CFS and the Post-COVID Syndrome" (Link), that has been developed and was recommended to the German government by the patient organisations German Association for ME/CFS (Deutsche Gesellschaft für ME/CFS) and Long COVID Germany . The Scientific Advisory Board of the ME/CFS Research Foundation (currently being established) will ensure compliance of all funded projects with these quality criteria.
The ME/CFS Research Foundation exclusively funds scientific, evidence-based, biomedical research on ME/CFS and Long Covid. An international advisory board advises on the use of funds (under construction). Earmarked donations will be directed to the appropriate projects (see the question "I would like to support a specific scientist with my donation"). We will announce the funded institutes and their projects / focal points as soon as the first funds have been pledged.
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 will publish regular updates on our work. When specific research results can be published depends on the study design and review process. However, we aim to publish both the research protocols (hypothesis, study design, outcome measures) and scientifically validated results of the studies we fund as soon as possible.
Yes, we aim to support scientists who are already familiar with the international state of research on ME/CFS. In addition, we are already networked with many international scientists and are constantly expanding this network. Our international scientific advisory board (currently being established) will also promote the networking of researchers.
Yes. From May 2023, the ME/CFS Research Foundation will fund and support the International ME/CFS Research Conference (for researchers and medical professionals) as well as the complementary ME/CFS Symposium on Research and Care at the Charité Fatigue Center (for patients, caretakers, and the interested public). We intend to run both events regularly, on an annual basis.
We may also organise or support further congresses and informal exchange events between funded researchers as needed. 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 posted on our website in due course. Further training events for practising doctors are not planned within the framework of our activities. However, these are regularly organised, e.g. 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.
English 
German 