ME/CFS and Long COVID research

Research is the path towards solution.

More biomedical research will lead to better diagnostic methods and, one day, causal treatments for these diseases. Research enhances medical knowledge, thereby enabling the medical and social care systems to provide better recognition and care for those affected.

No adequate research, diagnosis or treatment – until now...

There is far too little research into ME/CFS and Long COVID – relative to the number of people affected, the severity of the condition and the societal costs it incurs each year. Our two reports, which contain up-to-date figures, bear this out. 

ME/CFS and Long COVID incur enormous costs to society (over 64 billion euros per year in Germany). Although public research funding for these conditions has increased since 2020, there are still significant gaps: whilst the majority of funding goes towards healthcare research and observational studies, research into the mechanisms of the diseases and clinical trials of treatments remain severely underfunded.

As a result, over 1.4 million people in Germany affected by ME/CFS and Long COVID are, for the most part, not receiving adequate medical and social care. Even many doctors are largely unfamiliar with the condition. Those affected usually find themselves on a frustrating and fruitless ‘odyssey’ through the medical and social care systems. They are regularly misdiagnosed, or often not diagnosed at all, and receive inadequate treatment and care. This is also confirmed by the latest statement from the Leopoldina – National Academy of Sciences (external link)

We fund and support biomedical research to change this!

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The new report highlights significant gaps in clinical and basic research
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Our updated study featuring the latest data for 2020–2025 – read it now!
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Research Funding Programme 2026
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International ME/CFS Conference 2026, Berlin – Watch the presentations online!
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Current overview of our activities and projects
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Forschungsförderstrategie für 2026

Research is the way to sustainably improve the situation for patients

Sustainable research funding could make therapies possible in just a few years. This would make appropriate care for patients more affordable or perhaps even superfluous. We are doing everything we can to achieve this.

Our aim: We want to drive forward more basic and clinical biomedical research – funded by donations and operating on a not-for-profit basis. Privately funded projects are often the first step towards testing new approaches. We fund research projects, connect researchers, make ME/CFS research transparent, and provide facts and resources to raise awareness. This brings about progress – step by step.

Our Research Funding Programme 2026 is providing €2.4 million for seven new research projects .. The funding focuses on disease mechanisms, biomarkers and treatment options. 

It is only in the last few years that ME/CFS research has received public funding. The pharmaceutical industry and established institutions are still barely involved (even though the market potential is very high). With the ‘‘National Decade against Post-Infectious Diseases’’, a new chapter in public research funding is now beginning: €50 million per year has been announced. This is a great opportunity! We hope that this will facilitate the transition from small project budgets to the sustainable development of larger research structures.

However, as our current funding strategy explains, private funding will remain an important component of research support in 2026. Our focus will continue to be 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.

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International ME/CFS Conference 2025: Viele Unterzeichnende der Deklaration haben hier aktuelle Forschungsergebnisse präsentiert.

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:

  1. Funding research projects , e.g. through our Research Funding Programme 2026
  2. Supporting researcher networking and exchange, e.g. the International ME/CFS Conference (Berlin 2023,  2025 and 2026).
  3. Making research transparent, e.g. with:

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. Further details on applying for project funding are provided as part of our annual research funding programmes (see our latest call for applications dated February 2026).

Overview of all the research projects we fund

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.

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.

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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.

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 latest 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):

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