As a non-profit foundation, the ME/CFS Research Foundation has been committed to advancing biomedical ME/CFS research since 2022. This report shows the results of our work over the past 3 years and provides an outlook on ongoing projects.
Following up on the activities outlined in our last reports (see Winter 2023, Summer 2024), we have further expanded our commitment. We report on this along the structure of the activities and goals found in our research funding strategy:
- fundraising / donations (and use / funding)
- funding of ME/CFS research projects
- networking of researchers (international)
- public relations / making research transparent
1. Fundraising / donations (and use / funding)
Donations and funding form the basis of our work. We use these to finance research projects, networking between researchers and reporting on ME/CFS research. The funding available to the ME/CFS Research Foundation consists of:
- direct donations (individual donations and fundraising campaigns);
- indirect funding from major donors (e.g. companies or other foundations).
Indirect funding is channelled directly from donors to projects that have been preselected by the ME/CFS Research Foundation. These indirect funds significantly expand our overall funding capacity.
Encouragingly, we were able to more than double the overall funds made available to us in 2024, compared to the previous year. Direct donations more than tripled compared to the previous year. We were also able to significantly increase the volume of indirect funding in the same period.

These significant increases can be attributed to the many fundraising campaigns organised by patients, relatives, friends, associations, initiatives, choirs, etc. These are held on very different occasions (e.g. birthdays, ME/CFS Day on 12 May, concerts, sporting events, charity events). Alongside highlights such as the Hamburg Goldkehlchen charity concert in summer 2024, and many new donors, these increasingly frequent campaigns are the main reasons for the growing volume of donations.
We provide suggestions for how donation campaigns can be realised with manageable effort on our website and provide examples in a web news item. In 2025, we will add further suggestions and information on this topic to our website.
Since the establishment of the ME/CFS Research Foundation, we have been able to raise over two million euros in donations and funding. With these funds, we have already been able to advance important research, while further funding plans and projects are currently in preparation. We would like to thank all sponsors for their support! Your large and small donations show that we can achieve a great deal together.

The information on donations and utilisation of funds in the chart above covers the entire period from our founding in 2022 to the end of December 2024. On the utilisation side, around EUR 0.87 million (42.4% of donations and indirect funding) has so far been transferred to specific research projects and funding measures. Around EUR 1.07 million is currently available for new funding initiatives (52.3% of the funds available to date). At EUR 0.11 million (5.2% of the available funds), our administrative expenditure remains relatively low. To ensure that 100% of all donations and indirect funding go into research funding, all administrative costs of the foundation are covered by the founder Jörg Heydecke.
2. Funding of ME/CFS research projects
Review: our contribution to research projects
- Preliminary projects for clinical studies of the Charité Fatigue Center (external link) which were subsequently merged into the research network National Clinical Study Group (NKSG) (see our review from December 2023).
- research project on biomarkers and disease mechanisms at Charité - University Medicine Berlin, jointly funded with the Lost Voices Foundation (whose share is not included in the above figures). The project has been ongoing since the beginning of 2024 and is planned to run until the end of 2026. Details of the project can be found in background interviews with the researchers involved .
- Co-organised and financed the first ME/CFS model ward (clinic) for severely affected children and adolescents in Munich was realised as part of a broad-based project. In particular, we co-financed the sub-projects (1) model ward (clinic) for the care of severely affected children, adolescents and young adults, (2) the piloting of telemedical and outreach treatment modules for severely affected patients, and (3) the identification and evaluation of potential biomarkers for precision diagnostics. Originally planned for mid-2024, the clinic is due to move into new localities in early 2025. We will report on this project in more detail soon.
- At the end of 2024, funding was pledged for the research infrastructure at the MRI Chronic Fatigue Centre (MCFC) in Munich in the form of a laboratory and staff for the ME/CFS-Registry . These important elements of research would not have been adequately funded without our support for 2025. We will also report on this in more detail in the beginning of 2025.
- Further projects are in preparation and will be announced at the beginning of 2025. We also plan to provide detailed reports on these in subsequent reports.
Outlook: which projects will we support in the future?
To date, we have used the funding available to us in accordance with our research funding strategy from August 2023 eingesetzt. Darin war als “Phase 3” die “further development of existing funding structures and expansion to include new topics as well as funding for new projects" as "Phase 3". We will promptly revise our funding strategy and adapt our priorities to the changed framework conditions that have now been created by new publicly funded research projects, e.g:
- Since the end of 2024, the Federal Ministry of Education and Research (BMBF) has been funding a total of 21 new projects to research the disease mechanisms of ME/CFS (details can be found in our report).
- In April 2024, the Federal Ministry of Health (BMG) (external link) announced a funding initiative for health care research on post-COVID syndrome and ME/CFS. The BMG recently announced 30 projects (external link) within the framework of this initiative. The Innovation Fund of the Federal Joint Committee (G-BA) has been funding new projects in the field of health services research since the beginning of 2024.
As a foundation, we will thoroughly analyse all measures in order to then provide impetus in areas that continue to be insufficiently funded in consultation with our international scientific advisory board . In doing so, we aim to support new working groups and experts in ME/CFS research who are already involved in specific projects and collaborative programmes as part of the above-mentioned public funding. The establishment of new research centres, in conjunction with new ME/CFS outpatient clinics or clinics, is also one of the objectives worthy of support.
Our focus continues to be on biomedical research projects for which public funding is not (yet) available and has so far been insufficient, or whose public funding necessarily requires so-called "own contributions" or "third-party funds", which are rarely available in ME/CFS research. In this way, we enable projects that would otherwise not be able to fulfil the criteria for public funding.
3. Networking of researchers (international)
The networking of researchers promotes the exchange of knowledge, creates effective connections and synergies. So far, we have been working in this area:
- Co-organised and financed the international ME/CFS conference at Charité in May 2023 (see also the our review from December 2023);
- Contributed to the publication of the results of the conference as a scientific article in the journal "Autoimmunity Reviews" ;
- A summary of the results for patients and the public is published on our website.
Am 12. und 13. Mai 2025 werden wir erneut gemeinsam mit dem Charité Fatigue Centrum (CFC) eine International ME/CFS Conference in Berlin organisieren (link to announcement). At this conference, many of the research projects that have been running since 2022/2023 will present their initial results (see also the ME/CFS Research Update, especially Part 4).
In addition, we will be holding another symposium with the CFC on 13 May 2025 for those affected and the general public. Both events will be broadcast via livestream and made available on-demand free of charge afterwards.
We also provide information about research-oriented events organised by other organisations in the overview of current conferences and events on our website.
The ME/CFS Research Register has provided a systematic overview of the current ME/CFS research landscape with information on ongoing projects, participating working groups, publications, events and other details since the beginning of 2023. This overview is aimed at researchers and experts as well as those affected and the general public. The register currently covers Germany, Austria, Switzerland and the Netherlands (see our news from December 2024). All data will be continuously updated and the register will be expanded to include other countries in the future.
4. Public relations / research transparency
Information on ME/CFS research: We published a detailed ME/CFS Research Update: Germany & Austria in stages between March and September 2024. This summary of the data from the ME/CFS Research Register shows how and in which areas the research landscape has developed to date. In addition, we have reported on the 21 new BMBF-funded projects and expanded the scope of the ME/CFS Research Register from two to four countries (see above).
ME/CFS-Awareness: Last December, we launched the #LemonchallengeMECFS (to the announcement). This campaign is primarily intended to raise awareness of ME/CFS outside the circles of those affected and, to our great delight, has received a very positive response (see our update from 23 December 2024)
We regularly report on our work for more ME/CFS research and on the disease itself on the website and on social media on Instagram, Facebook, X/Twitter, LinkedIn (external links) and recently also on Threads, youtube and TikTok (external links). We show details of our projects, collect donations and encourage fundraising campaigns to finance our work. Our newsletter also provides information on current activities and developments in ME/CFS research.
The continuously increasing response to our social media and newsletter posts as well as the growing number of followers on our social media channels confirms us in our work and strengthens our public visibility. It also raises awareness of ME/CFS and the need for more research.
We offer press representatives up-to-date information on the ME/CFS research landscape and our activities in the press section press section of our website and through personal contact. We are happy to provide information and welcome enquiries and mentions.
Thank you! Things are moving forward. #nevergiveup
ME/CFS research continues to gather pace in Germany and internationally. With the help of many researchers, affected individuals and relatives in organisations and initiatives, as well as politicians, ME/CFS research has made significant progress since 2022, particularly in Germany. We would like to thank everyone who has contributed to this positive development through us or in other ways.
To ensure that initial scientific successes can be translated into better diagnosis, care and ultimately treatment of ME/CFS as quickly as possible, we need even more and, above all, constant commitment. We call on everyone to continue to support us in this important work through donations!
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 2024), 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!
And please extend our reach and follow us on social media (external links below). THANK YOU!
We appreciate all kinds of Support!
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