Half-year report summer 2025: what have we achieved so far?

Every 6 months, we report on our activities, show the results of our work for more biomedical research and provide an outlook on ongoing projects. As a charitable foundation, our commitment is based on the active involvement of our team and, above all, on the donations of a growing number of supporters, to whom we would like to express our sincere appreciation.

In the first half of 2025, we were able to expand our activities and continue some of the projects already started (see our reports from winter 2024 and Summer 2024). This report is structured in line with our four work areas:

1. Funding of research projects
2. Networking of researchers 
3. Public relations and information
4. Fundraising and use of donations

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1. Funding of research projects

Newly supported research projects (since Jan 2025):

At the Munich Chronic Fatigue Centre for Young People (MCFC), we are (co-)funding three additional projects, which create or maintain urgently needed basic elements and infrastructures for ME/CFS research and otherwise would not have been implemented (Details can be found in our funding announcement): 

• MCFC Laboratory for the preparation of biosamples in the context of ME/CFS research 
• ME/CFS Biobank in which biosamples from patients are stored 
• Research project Healthy Control Population für PAIS-ME/CFS (HelP) (external link)

Furthermore we support the establishment of the nationwide paediatric care and research network PEDNET-LC as a cooperating partner (external links to PEDNET-LC project website and BMG website), which is dedicated to Long COVID-like diseases (including ME/CFS regardless of the trigger). 

Review: our previous contributions to research projects (until Dec 2024):

• Pre-projects for clinical studies at the Charité Fatigue Center (CFC) (external link) (see our review from December 2023)
• Research project on biomarkers and disease mechanisms at Charité – Universitätsmedizin Berlin (see project announcement and background interviews with the researchers) 
• A new ME/CFS model ward (clinic) for severely affected children and adolescents in Munich (see project announcement) was co-financed by the foundation. The opening of the clinic took place on 23 May 2025 (see our short videos on Instagram, Facebook, LinkedIn , Youtube, TikTok / external links). Interviews with project members will be published soon.

Outlook: which research projects will we be funding in the future? 

One of the basic assumptions of our research funding strategy from 2023 was that essential research infrastructure and projects would receive sustainable public funding until the end of 2024. An overview of the funding provided by the last federal government can be found in our ME/CFS Research Update Part 8. As part of its public funding, the Federal Ministry of Health (BMG) announced a number of single and collaborative projects on healthcare research (external link) on Long COVID and, in part, ME/CFS, some of which were presented at the ME/CFS Symposium 2025 . However, basic and clinical research required for better diagnostics and therapy has unfortunately only been publicly funded to a lesser extent, mainly in the form of the 21 research projects funded by the Federal Ministry of Research, Technology and Space (BMFTR) (see ME/CFS Symposium 2025 "Forschungsverbünde ME/CFS"). The extent to which the new federal government will provide further funding for ME/CFS research is currently unclear. 

In the coming weeks, together with our international scientific advisory board, we will revise our funding priorities and criteria and adapt them to the current situation. In doing so, we will continue to provide support for insufficiently funded research areas and topics. Our future support may also be targeted at scientific working groups already involved in specific projects as part of the above-mentioned public funding programmes.

Our focus remains on funding biomedical research projects for which public funding is not (yet) available or only insufficiently available, or for which receiving public funding necessarily requires so-called "own contributions" or "third-party funds", which are rarely available in ME/CFS research to date. In this way, we enable projects that would otherwise not be able to fulfil the public funding criteria.

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2. Networking of researchers

The complementary ME/CFS Symposium 2025 on the afternoon of 13 May was aimed at people living with ME/CFS, their relatives and the general public and provided information on the current status of new and ongoing research projects in Germany. Over 2,600 participants attended the hybrid event.

Summaries, videos and presentations from both events are available on our website and on Youtube (external link). In May 2026, we will once again organise the International ME/CFS Conference in Berlin, together with the CFC. We provide information on research-oriented events organised by other organisations in the overview of current conferences and events on our website.

Upon its inception, the register covered ME/CFS research in Germany and Austria. Since the end of 2024, the register also includes research in the Netherlands and Switzerland. The data will be continuously updated and the register gradually expanded to include other countries.

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3. Public relations and information

The report was mentioned in many press articles (e.g. Der Spiegel, FAZ, Stern, manager magazin, Tagespiegel, Frankfurter Rundschau, N-TV, Neue Züricher Zeitung, Ärzteblatt - external links) and was also addressed by Prof Karl Lauterbach in his foreword at the ME/CFS Symposium 2025 and subsequent statements (external link).

Patient organisations and initiatives also took up the findings. The report draws the attention of the public, politicians, the private sector and other societal stakeholders to the fact that ME/CFS and Long COVID are not only major crises in medical terms but also socially and economically. This crisis is (and will continue to be) a major burden on our society. More biomedical ME/CFS research is therefore not only socially justified but also a sensible economic investment. We hope that these statements will be taken up more widely, e.g. by associations, trade unions or businesses.

We also provide information about our work for more ME/CFS research and about the disease itself on our website and on social media on Instagram, Facebook, X/Twitter, LinkedIn, Youtube, TikTok, Threads and BlueSky (external links). We report on our projects and call for donations and fundraising campaigns . Our newsletter provides information about current activities, events and developments in connection with ME/CFS research. Continuously increasing follower numbers and newsletter subscriptions confirm our work and are important multipliers for our outreach efforts.

We also offer press representatives up-to-date information on ME/CFS research and our activities in the press section of our website and through personal contact. We are happy to provide information and welcome enquiries and mentions.

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4 Fundraising and use of donations

Typically, the volume of donations in the second half of the year is significantly higher than in the first half. This is another reason why we are very confident about the coming months and continue to call on all supporters to get involved. Together we can make a big difference!

All administrative costs, incurred for the operation and various activities of the Foundation are borne by the founder of the ME/CFS Research Foundation.

Since the establishment of the ME/CFS Research Foundation, a total of 2.75 million Euros in donations have been raised . Of this, 1.4 million Euros (50.5% of all income) have already been invested in ME/CFS research. 1.16 million Euros are currently available for new funding measures. To date, 200,000 Euros have been spent on administration and fundraising activities (and refinanced by the founder of the foundation). The following chart provides an overview of all income and expenditure to date as well as the funding currently available to the foundation:

Joerg Heydecke, founder and CEO of the ME/CFS Research Foundation, comments: "The available funds provide a solid basis for our future work. The increase in donations impressively shows how much those affected and their social environment can achieve together. Our goal is to motivate even more of the 1.5 million people living with ME/CFS or Long COVID in Germany and, above all, the people in their surroundings to get involved in fundraising campaigns for more research. In order for medical research to make further progress in the development of biomarkers, diagnostic possibilities and targeted treatment options, the financial support for research projects must be significantly and sustainably increased. This applies in particular to the domain of public funding, where its key role in the urgently needed progress in research can only be supplemented, but not replaced, by private donors."

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We would like to thank all our supporters! 

ME/CFS research in Germany, Europe and worldwide continues to gather pace. This was already demonstrated in our ME/CFS Research Update (as of Sep. 2024) and most recently by the contributions at the International ME/CFS Conference 2025 and the ME/CFS Symposium 2025. The recently made progress must now be sustainably expanded. Above all, this requires more public research funding, especially for basic and clinical research. Our report on the prevalence and costs of Long COVID and ME/CFS in Germany emphasises that more ME/CFS research is urgently needed by society and is a sensible economic investment. 

With the involvement of many researchers, people living with ME/CFS and their relatives, organisations and initiatives, but also politicians, ME/CFS research has developed significantly since 2022, especially in Germany. As the ME/CFS Research Foundation, we are pleased to be able to contribute to this. We would like to thank everyone who made this positive development possible through providing their support to us or in other ways.

In order for initial scientific successes to be translated as quickly as possible into better diagnosis, care and ultimately treatment of ME/CFS, even more and, above all, constant commitment is needed. 

We therefore continue to call for donations to support our work!

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How can you support the work of the ME/CFS Research Foundation?

There is still a long way to go before diagnosis, care and treatment of ME/CFS patients will one day become a medical and social standard. We at the ME/CFS Research Foundation are focussing on biomedical research, which we see as the key element in solving these problems (more on this in our research funding strategy and in our half year report summer 2025, which summarises our activities). To do this, we need extensive support from private donors – those affected, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you are not able to provide direct support, you can share our story and motivate others to help. Because only together can such a feat be achieved.

We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. better ME/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!

Thank you for your support!