24 months of commitment for more biomedical ME/CFS research - what have we achieved?

When we began our work at the end of 2021, there were around 500,000 ME/CFS patients in Germany but no public funding for biomedical research into this disease (the first projects are now being publicly funded). The ME/CFS Research Foundation was founded at the beginning of 2022 to initiate and further ME/CFS research with private donations. 

Time for a first review of our activities and achievements over the past two years:

Initial funding for research projects at Charité University Medicine Berlin

After establishing the foundation, we were able, supported by larger private donations, to initiate preparatory work for ME/CFS research projects at the Charité Fatigue Center . From October 2022, these preliminary projects have been merged into a research collaboration funded by the Federal Ministry of Education and Research (BMBF) . The collaboration named National Clinical Study Group (NKSG) researches the effect of already drugs and medical therapies approved for other diseases in their effect in ME/CFS and post-COVID patients. 

Public relations and fundraising

This website has been online since July 2022. We provide information about our objectives, the current state of research into ME/CFS and the disease itself. We report on our projects and we collect Donate for research funding. In addition, we launched accounts with InstagramFacebookX/TwitterLinkedIn and XING . With our Newsletter we inform patients and relatives, our supporters and journalists, experts and interested parties about our current activities and about events and developments related to research into ME/CFS.

Networking of researchers and transparency

Since the end of 2022, we have been focussing on networking researchers in order to exploit synergies and initiate collaboration. At the international ME/CFS conference and at the subsequent ME/CFS Symposium in May 2023 at Charité Berlin, experts, politicians and patients were able to find updates on the current state of research and exchange their views. We helped organise, finance and comprehensively document both events. In our video recordings of the ME/CFS conference and the ME/CFS symposium all presentations can be re-viewed. The results of the ME/CFS conference has been published as a scientific article in the leading medical journal "Autoimmunity Reviews" , recently.

In collaboration with the Charité Fatigue Center we want to establish the ME/CSF conference as a regular event. We are also planning "research updates" to complement the face-to-face event online at shorter intervals.

Scientific Advisory Board

In the summer of 2023, we were able to announce our international advisory board .Each of the scientists in the board has been researching and publishing on ME/CFS for some time. Their role in the ME/CFS Research Foundation is to advise on decisions regarding project funding and future direction. Together, we have developed our research funding strategy .

In preparation: ME/CFS Research Register

With the ME/CFS Research Register (MRR), we intend to create an overview of ongoing research projects. The MRR is going to document projects, participating working groups and researchers. At the same time, the respective research focuses and directions will be explained. The MRR will therefore not only provide experts with an overview of the research situation. It also helps those affected and interested parties to better understand research projects and their objectives. The register also contains information on the duration of clinical studies analyzing new therapeutic procedures. When the "beta version" of the MRR is launched at the beginning of 2024, German and Austrian projects will initially be included. Other countries are in preparation.

In preparation: further ME/CFS research funding

Two new project grants for innovative research projects at the Charité Fatigue Center and at the Chronic Fatigue Centre for young people in Munich have been in preparation for some time. These studies involve, for example, possible ME/CFS biomarkers and disease mechanisms. We will announce further details later this year and in early 2024. 

For 2024+, we are developing processes and criteria for our long-term project funding. We intend to announce these in the first half of next year. Our focus will continue to be on using private donations to support biomedical ME/CFS research for which public funding is not (yet) available or not available in time.

Donations and utilisation / spending

We have so far achieved a total donation volume of 822,902 EUR (cumulative from 2022 to November 2023). Of this, 229,467 EUR went to the Research Foundation as direct donations. A further 566,000 EUR are channelled to projects as "indirect" funding. 

These "indirect" funds are provided by the sponsors (major donors) to selected projects in coordination with the ME/CFS Research Foundation and thus significantly increase our direct funding capacity. 

Almost half of the donations have so far been used for project funding and for the ME/CFS conference/symposium. Currently, 437,466 EUR are available for future funding measures. Administrative costs are covered by donations from the founder of the foundation, Joerg Heydecke.

Thank you!

With the involvement of many stakeholders such as researchers, patients and relatives in organisations and initiatives, and politicians, German ME/CFS research has made important initial progress in the last 24 months. We have also made our contribution to this. We would like to thank everyone who has contributed to this positive development through us or in other ways. We hope you will remain committed! Because there is still a lot to do.

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). To do this, we need extensive support from private donors - patients, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you can't support us directly, maybe you can share our story and motivate others to help. Because only together is such a feat possible.

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! 

We appreciate all kinds of Support!

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