Update: research funding strategy of the ME/CFS Research Foundation

Funding biomedical research on ME/CFS and Long COVID has been the stated goal of the ME/CFS Research Foundation since its founding four years ago. With our updated funding strategy for 2026, we are solidifying our commitment to better diagnostics and potential treatment options. 

The funding strategy to-date, that we have been implementing since August 2023 has focused on maintaining and expanding the ME/CFS research networks in Germany that have been established since 2022. The priorities set at that time have provided important support and new impetus for the ME/CFS and Long COVID research that is currently being developed.

Review of our priorities and activities in recent years: 

1. Networking among researchers: the International ME/CFS Conference in Berlin in May has established itself as an important networking meeting for leading researchers worldwide. In May 2025, the International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID was initiated there, among other things. In addition, with the ME/CFS Research Register , we provide an up-to-date overview of ME/CFS research in six countries to date as an additional information and networking tool for researchers and other interest groups.
2. Preservation of central research networks and structures created since 2022/23: Project funding at the Munich Chronic Fatigue Centre for Young People (MCFC) was able to preserve fundamental research infrastructure on a transitional basis at a time when its continued public funding was not yet guaranteed.
3. Expansion to include new topics and funding for individual projects: Both the research project on ME/CFS biomarkers and disease mechanisms funded at Charité – Universitätsmedizin Berlin and the co-funding of the MCFC's model station for severely affected children and adolescents have addressed this goal. We will report shortly on further funding projects already underway at Charité - Universitätsmedizin Berlin.
4. Expansion of fundraising and promotion of project initiatives in other EU countries: We have recently been able to successfully expand our fundraising activities (see half year report summer 2025). The expansion of our project funding to other EU countries has not yet been implemented. Unfortunately, important prerequisites for this – a sustainable assumption of funding responsibility in Germany by politicians, established funding institutions and the pharmaceutical industry – have not yet been met. 

In addition to our existing funding projects, we have been able to build up a fact-based information service with the ME/CFS Research Register, the ME/CFS Research Update  (also for the Netherlands/Switzerland and most recently Norway/Iceland) and the study on the prevalence and costs of Long COVID and ME/CFS , which is increasingly being used by the press, other organisations and politicians.

Change in the research landscape through the "National Decade Against Post-Infectious Diseases"

The recently announced National Decade Against Post-Infectious Diseases National Decade Against Post-Infectious Diseases (external link) opens up great opportunities for ME/CFS and Long COVID research and will hopefully finally enable sustainable funding for comprehensive research structures. However, the first projects funded by the Decade will not start until the end of 2026 at the earliest (with results tob e expected 1-2 years later). Before the announced funding can be awarded (€50 million per year from 2026 to 2036), funding criteria must first be defined, award procedures established, application phases for researchers set up and coordinating structures for the decade programme created.

The year 2026 represents a kind of "transition phase" for ME/CFS research funding in Germany and thus also for the more than 1.5 million people affected and their families. In order to enable new projects during this phase, the ME/CFS Research Foundation will announce a new funding programme in the first quarter of 2026. In addition, we will work constructively with patient organisations to help shape the content of the public "decade funding" programme. 

What are our funding priorities for the year 2026?

The defined goal for our 2026 funding programme is to promote biomedical research that will contribute significantly to improving the diagnosis and enabling disease-modifying treatment of ME/CFS in the coming years. To this end, we will enable basic/translational research and clinical research that addresses unexplained or insufficiently understood disease mechanisms, biomarkers and treatment options for ME/CFS.

In 2026, our research funding will support projects that, based on the latest scientific findings, address the following aspects:

1. Elucidation of the disease mechanisms, underlying central ME/CFS symptoms, such as PEM (post-exertional malaise), pain, muscle weakness, cognitive dysfunction, circulatory disorders, sleep disorders and dysautonomia.
2. Developing reliable diagnostic, prognostic or predictive (taking into account important variables such as sex/gender, age, duration of illness and severity). We focus on projects investigating autoimmunity, immune dysregulation, metabolic disorders, inflammation, vascular dysfunction, and nervous system dysfunction as causal factors in the development and progression of ME/CFS.
3. Testing innovative, disease-mechanism-targeted drugs and treatment approaches for their suitability for effective and safe treatment of ME/CFS. This includes drugs already approved for other diseases, such as CD19+ or CD20+ B-cell depletion, CD38+ plasmablast/cell depletion, B-cell receptor signalling and granulocyte inhibition, selective B/T-cell depletion, inhibition of plasma cell maturation and GLP-1 receptor agonists, or other promising drug candidates targeting the above-mentioned disease mechanisms.

The evaluation and selection of eligible project applications under the new funding programme is based on criteria defined in close collaboration with our scientific advisory board . Details of the evaluation process and criteria will be published in due course.

At the end of 2026, we will reassess the content of public research funding defined by then within the framework of the "National Decade" and the other funding environment, and align our funding strategy for 2027 and beyond accordingly.

What role will the ME/CFS Research Foundation play in the future?

We also intend to further expand the foundation's other areas of work wherever possible. Overall, we are active in the following areas: 

1. Research funding (see the above priorities for 2026)
2. Research networking (e.g. International ME/CFS Conference 2026, ME/CFS Research Register)
3. Making research progress transparent 
4. Providing facts and resources for education and information
5. Fundraising and awareness (as the basis of our work)

Researchers from our network, the patient organisations, and we ourselves are convinced that strong private partners such as the ME/CFS Research Foundation are still needed in the field of ME/CFS research funding in order to provide the right impetus in the critical "transition phase" that is now beginning, with a view to ensuring that the "National Decade" is focused in terms of content and strategy. We are aware of this role and are doing everything we can to live up to our increased responsibility.

For our future commitment, we continue to hope for the strong support of patients, their families and, increasingly, the wider public! 

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

We are committed to ensuring that the diagnosis, care and treatment of ME/CFS sufferers will one day become the medical and social norm. As the ME/CFS Research Foundation, we focus on biomedical research, which we see as the key to solving these problems (more on this in 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!