Our commitment to more biomedical ME/CFS research - what have we achieved so far?

When we started our work at the end of 2021, there were already around 500,000 people with ME/CFS in Germany but (still) hardly any public funding for research into the disease. Since the establishment of the non-profit ME/CFS Research Foundation at the beginning of 2022, we have been working for more biomedical ME/CFS research, financed by private donations.

Meanwhile public funding programmes have been launched. ME/CFS research in Germany is slowly gaining momentum, as shown by the increasing number of ongoing research projects (for details see our ME/CFS Research Update).

Our last review in December 2023 looked at the activities since the launch of the ME/CFS Research Foundation up to the end of 2023. Since then, we have been able to realise further milestones - in line with the objectives of our ME/CFS research funding strategy:

1. fundraising / donations (and use / funding)
2. funding of ME/CFS research projects
3. networking of researchers (international)
4. public relations / making research transparent

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1. Fundraising / donations (and use / funding)

Since our founding we have raised over EUR 0.82 million in private donations and funding until the end of December 2023. In the period from January to mid-July 2024, we received a further EUR 0.55 million in donations, giving us a total of EUR 1.37 million to date. With these funds, we were able to provide important stimuli for research and have thus created a sound basis for our future work. A big thank you for this support goes to all our sponsors! Their large and small commitments show that together we can make great strides.

There are currently more and more fundraising campaigns in which those affected, relatives, but also friends, associations, initiatives, choirs, etc. collect donations for research. They collect donations for research on very different occasions (e.g. birthdays, ME/CFS Day on 12 May, concerts, sporting events, charity events). We have expanded our donation page with suggestions and published examples and further tips in our news section. We are currently seeing new fundraising campaigns every week and look forward to many more creative initiatives and support for our work!

The funding of the ME/CFS Research Foundation is made up of:

• direct donations (individual donations and fundraising campaigns); 
• indirect funding (from large sponsors such as companies or other foundations).

Indirect funding goes directly to projects selected in advance by the ME/CFS Research Foundation in close consultation with the sponsors. These funds supplement and expand our funding capacity, as the current financial status of the ME/CFS Research Foundation on the donations page shows:

The figures in the chart refer to the entire period from the founding in 2022 to mid-July 2024. On the use/funding side, around EUR 0.71 mln (52% of all donations and indirect funding) has been invested in specific research projects and other initiatives to date. Just under EUR 70,000 (5% of all available funding) has been spent on administrative costs. As previously outlined, all of the foundation's administrative costs are covered by the founder Jörg Heydecke, so that 100% of all donations and indirect funding can be channelled into research funding. Around EUR 0.58 mln is currently available for new funding measures (43% of the donations available to date), the utilisation of which is outlined below.

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2. Funding of ME/CFS research projects

In our December 2023 review we reported on the foundation’s support of important preliminary projects around clinical studies at the Charité Fatigue Center (external link), which were later merged into the joint research network National Clinical Study Group (NKSG) (external link). review in December 2023 Last December, we announced two further innovative research projects:

At Charité - University Medicine, we have been funding a research project on biomarkers and disease mechanisms since January 2024, together with the Lost Voices Foundation (the latter's 1/3 funding share of this project is not included in the above figures). In this project, a method that was further developed at the Max Planck Institute for the Physics of Light in Erlangen is being used for the first time in biomedical ME/CFS research. We talked about the exciting details of this project with the involved researchers in three interviews , which we are publishing in several parts. 

Another funded project is the first ME/CFS model ward (clinic) for severely affected children and adolescents in Munich. The ME/CFS Research Foundation is one of the private co-financiers of this broad-based project. With our contribution, we are supporting in particular the sub-projects (1) model ward (clinic) for the care of seriously ill children, adolescents and young adults with post-COVID syndrome, post-VAC syndrome and ME/CFS, (2) the piloting of pilot-controlled, telemedical and outreach treatment modules for the most severely affected, and (3) the identification and evaluation of potential biomarkers for precision diagnostics. We will report on the details of this innovative project in due course.

Outlook: what other projects will we support? 

We will use the available funds (currently around EUR 0.58 million, see chart) in accordance with our research funding strategy . The strategy envisaged the "support of existing and already funded structures and their expansion to include new topics as well as the funding of new projects" as "Phase 3". The announcement of the projects which will be implemented under the recently announced funding initiatives of the Federal Government, e.g. the funding guideline for research into ME/CFS pathomechanisms of the Federal Ministry of Education and Research (BMBF) (external link) and various funding initiatives of the Federal Ministry of Health (BMG) for health care research (external link), are expected from this autumn onwards. We will analyse these in order to then provide new impetus for so far insufficiently funded research areas in consultation with our international scientific advisory board . Among other objectives, we are considering to support new working groups/experts in ME/CFS research and to connect them with the structures that have already been established. The establishment of new research centres, in conjunction with new ME/CFS outpatient clinics, is another objective we consider worthy of support.

The focus of our funding continues to be on biomedical ME/CFS research projects for which public funding is not (yet) available, or for which 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 criteria for public funding. We will provide more detailed insights into this aspect of research funding in the course of the year. 

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3. Networking of researchers (international)

The networking of researchers promotes the exchange of knowledge, creates effective connections and enables the creation of synergies. The organisation and funding of the international ME/CFS conference at the Charité in May 2023, as a concrete funding initiative to achieve this, was already mentioned in the review in December 2023 . The results of the conference were published as a scientific article in the journal "Autoimmunity Reviews" and can also be found as a summary for patients and the public on our website. 

Many of the research projects started in 2022/2023 will reach important milestones by the beginning of 2025 and will be able to present their first results (see Part 4 of the ME/CFS research update). Together with Charité, we are therefore planning the next international ME/CFS Conference for May 2025 as well as another ME/CFS Symposium for those affected and the general public. We also provide information about research-oriented events organised by other organisations in the overview of current conferences and events on our website.

Since February 2023, our 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 such as research types and areas. The register not only provides an overview for experts, it also helps those affected and other interested parties to view research projects and their objectives on a single website. To date, the register covers ME/CFS research in Germany and Austria. The data is continuously updated and gradually expanded to include other countries. 

4. Public relations / research transparency

Since July 2022, we have been providing 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 and XING (external links). We report on our projects, collect donations and motivate for fundraising campaigns to finance our work for more biomedical ME/CFS research. Our newsletter also provides information on current activities, events and developments related to ME/CFS research. The continuously increasing numbers of followers on our various channels as well as newsletter subscriptions reaffirm us in our work. Followers are also important multipliers for our communication work, so that the general public learns more about ME/CFS and the need for funding for research projects receives more attention.

We offer press representatives up-to-date information on the ME/CFS research landscape 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.

Thank you! Things are moving forward. #nevergiveup

ME/CFS research in Germany, Europe and worldwide is now picking up speed (see ME/CFS Research Update). With the involvement 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. As the ME/CFS Research Foundation, we are pleased that we have been able to make an important contribution to this. 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!

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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). 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 invest all donations and other kinds of support into scientifically excellent research, networking of researchers and ultimately visible results, i.e. better ME/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!