ME/CFS Research Foundation Invests €2.4 Million in Seven New Research Projects Across Germany
Key Insights
Europe's largest privately funded ME/CFS (search) research programme is investing €2.4 million across seven new projects at eight German research institutions, including Charité Berlin and Heidelberg University Hospital.
Funded projects will investigate B-cell depletion therapy, genetic causes, biomarkers for diagnosis, autoimmunity, immunological mechanisms in children, and machine learning-assisted biomarker development.
ME/CFS (search) affects over 657,000 people in Germany and more than 40 million worldwide, with 60–75% unable to work and no curative treatments currently available.
The non-profit ME/CFS Research Foundation (search) has announced a €2.4 million investment in seven new research projects aimed at advancing the understanding and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS (search)). The funding, which represents Europe's largest privately funded research programme for the condition, was increased from an originally planned €2 million due to rising donation income.
The projects are set to begin this summer at eight research institutions across Germany, including Charité – Universitätsmedizin Berlin, the Berlin Institute of Health (search) (BIH), Hannover Medical School, Goethe University Frankfurt, Erlangen University Hospital, the Technical University of Munich/Helmholtz Munich, and Heidelberg University Hospital.
"We are currently witnessing tremendous scientific momentum in ME/CFS (search) research. Through our 2026 funding programme, we are supporting particularly innovative projects at an early stage and helping to ensure that promising scientific findings are translated more quickly into new diagnostic and therapeutic approaches," said Joerg Heydecke, founder and CEO of the ME/CFS Research Foundation (search).
Diverse Research Portfolio Targets Unmet Needs
The seven funded projects span a wide range of scientific approaches. Key areas of investigation include B-cell depletion therapy, genetic causes of the disease, biomarkers for diagnosis and patient stratification, autoimmunity and chronic inflammatory processes, immunological mechanisms in children and adolescents, and machine learning-assisted development of new biomarkers.
The projects were selected through a multi-stage scientific review process. Following formal screening, 26 applications were assessed by an international jury comprising more than 20 experts from ten countries, alongside the Foundation's Scientific Advisory Board and its scientific team.
The Foundation views its funding as a targeted complement to public research funding, intended to lay scientific foundations upon which larger follow-up projects can build — particularly within the context of Germany's National Decade against Post-Infectious Diseases, implemented by the Federal Ministry of Research, Technology and Space.
The Growing Burden of ME/CFS (search)
ME/CFS (search) is a chronic, severe multisystemic condition primarily affecting the nervous and immune systems. It is predominantly post-infectious in origin, including as a consequence of COVID-19, and represents the most severe form of Long COVID. The hallmark symptom is post-exertional malaise (PEM) — a marked worsening of symptoms following everyday physical or mental activities.
In Germany alone, more than 657,000 people were living with ME/CFS (search) in 2025. Prior to the COVID-19 pandemic, approximately 400,000 people in Germany had the condition. Worldwide, the number of affected individuals exceeds 40 million. Between 60 and 75 percent of all sufferers are unable to work, and many are confined to their homes or beds.
Due to the current lack of biomarkers, diagnosing ME/CFS (search) is only possible through detailed medical history and a multidisciplinary diagnostic process to rule out other conditions. Many physicians lack the necessary expertise, and it often takes years for patients to receive a diagnosis. To date, no effective curative treatment exists.
DISCOVER-ME: International Effort Under MedUni Vienna Leadership
Complementing the Foundation's funding programme, the Medical University of Vienna has launched the international "DISCOVER-ME" project, coordinated by Eva Untersmayr-Elsenhuber from the Center for Pathophysiology, Infectiology and Immunology.
According to research data from MedUni Vienna, it takes an average of five years to reach a diagnosis in Austria, Germany, and Switzerland. A study from Angers University Hospital demonstrated that with every month of diagnostic delay, the likelihood of clinical improvement decreases.
"More than 60 per cent of patients are unable to work, and around 20 per cent are so severely affected by the condition that they are confined to their homes or beds. The annual socio-economic costs in Europe are estimated at around 40 billion euros, with data collected following the SARS-CoV-2 pandemic suggesting that these costs are rising," said Untersmayr-Elsenhuber, who also serves as one of two directors of the National Reference Centre for Post-Viral Syndromes at MedUni Vienna.
DISCOVER-ME follows an integrative, multi-stage research approach. In the first phase, 2,000 data sets will be collected using a refined, validated questionnaire to identify different clinical presentations of ME/CFS (search). Subsequently, a comprehensive biological characterization will be conducted using patient samples from several independent European biobanks, including samples from more than 700 ME/CFS patients and nearly 200 control subjects.
The study will investigate changes in the immune system, metabolism, hormonal balance, and mitochondrial function. Modern multi-omics methods will be employed, involving parallel analysis of large molecular datasets derived from epigenetic patterns and proteins (proteomics). The goal is to identify reproducible biomarkers and classify ME/CFS (search) into clinically relevant subtypes based on biological mechanisms.
Drug Repurposing and Digital Twins
The data obtained will be integrated into a newly developed, computer-assisted disease map. On this basis, in silico models and patient-specific "digital twins" will be created, enabling virtual testing of potential therapeutic approaches. As part of a systematic drug repurposing approach, more than 9,000 already known active substances are being investigated using computer simulations, with the aim of selecting 20 to 50 particularly promising drugs for further research in subsequent projects.
"With DISCOVER-ME, we aim to systematically map the biological basis of the disease and translate this into a clinically applicable concept," said Untersmayr-Elsenhuber. "Our goal is to be able to offer patients a confirmed diagnosis at an earlier stage in future, along with treatment options tailored to their individual disease mechanisms."