Press release
ME/CFS – where does the research stand today?
On the occasion of International ME/CFS Awareness Day on 12 May 2025, leading international experts will gather in Berlin on 12 and 13 May for two dedicated events to discuss the current state of ME/CFS and Long Covid research.
Hamburg / Berlin, 1 May 2025
The ME/CFS Symposium 2025 – Research in Germany on 13 May will provide information about new German ME/CFS research projects. It is aimed at medical professionals, patients, relatives and the interested public. Research projects that have been made possible with the support of the Federal Ministry of Health (BMG) and the Federal Ministry of Education and Research (BMBF) will be presented, covering the areas of care, treatment, basic and clinical research. Some of the projects also investigate aspects of Long COVID and Post-COVID Syndrome.
The symposium will be opened by Prof. Dr. Karl Lauterbach. Scientific directors are Prof Carmen Scheibenbogen, Director of the Charité Fatigue Centre, and Prof Uta Behrends, MD, Head of the MRI Chronic Fatigue Centre for Young People at the TU Munich Hospital and Munich Clinic Schwabing.
Examples from the symposium programme:
- PEDNET-LC: The new paediatric network is headed by Prof. Dr. Uta Behrends and focuses on ‘model measures for the care of children and adolescents with long COVID and diseases that have a similar cause or disease manifestation’
((link to the PEDNET-LC project).). - CURE-MEProf. Dr. Birgit Sawatzki (Charité Berlin) presents this research network, which focuses on autoimmune responses for identifying targets in ME/CFS (link to the CURE-ME project).
- The Pathomechanisms of ME/CFS joint project also includes BioSig-PEM, which is led by Prof. Dr. Christian Puta (University of Jena) and investigates biopathological signatures of post-exertional malaise (link to the BioSig-PEM project).
Regarding the societal costs of ME/CFS and Long Covid , the ME/CFS Research Foundation has conducted an as yet unpublished study. The results will be presented by Joerg Heydecke (Managing Director of the Foundation) at the end of the symposium.
Participation in the symposium will take place online via livestream. Registration is required (free of charge). All presentations will be held in German. Video recordings of the presentations will be available on the ME/CFS Research Foundation website afterwards.
Agenda and speakers for the symposium on 13 May 2025:
https://events.mecfs-research.org/en/events/symposium_2025
Registration:
https://events.mecfs-research.org/de/events/symposium_2025/registration
The International ME/CFS Conference 2025 will take place before that, on 12–13 May. The two-day scientific conference on the care, research and treatment of ME/CFS and Post-COVID Syndrome is aimed at doctors, medical professionals, researchers and interdisciplinary experts from the fields of medicine and biology.
Under the direction of Prof Carmen Scheibenbogen , over 70 leading experts from Europe, the USA, Japan and Israel will come together to discuss the latest research findings.
All lectures will be offered free of charge as online livestreams, registration is required. Medical professionals receive up to 12 CME continuing education credits for online participation.. The presentations will be held in English. The conference presentations will also be available to view on the ME/CFS Research Foundation website afterwards.
Agenda and speakers for the International ME/CFS Conference 2025:
https://events.mecfs-research.org/en/events/conference_2025
Registration:
https://events.mecfs-research.org/en/events/conference_2025/registration
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Further information on ME/CFS, the foundation and current media coverage can be found in the press section of our website: https://mecfs-research.org/press/
Donation info: https://mecfs-research.org/spenden/
donation account: DE35 2004 0000 0628 5316 00 (Commerzbank)
ME/CFS Research Foundation is a non-profit limited liability company and fulfils the statutory requirements according to §§ 51, 59, 60 and 61 AO (German tax laws). It may issue donation receipts within the meaning of Section 10b of the German Income Tax Act.
About ME/CFS Research Foundation
The non-profit ME/CFS Research Foundation supports and promotes biomedical research into the disease spectrum of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Due to insufficient research, there is still no causal therapy for this common, severe and complex multisystemic disease. The foundation finances research projects, connects researchers and provides information about research. In doing so, the foundation cooperates with many ME/CFS patient organisations that have long been working to improve the situation.
About ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and long COVID:
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a chronic, severe multisystem disease with a wide range of disorders, primarily affecting the nervous and immune systems. ME/CFS is predominantly post-infectious, including as a consequence of COVID-19. It is the most severe form of Long Covid. ME/CFS patients have pronounced physical and cognitive symptoms, a very low quality of life and often a high degree of disability. 60 to 75 percent of all patients are unable to work, many of them are housebound or bedridden. The main symptom is severe exercise intolerance with worsening symptoms after everyday activities (PEM = post-exertional malaise).
Due to the lack of a biomarker, ME/CFS can currently only be diagnosed through extensive medical history and cross-disciplinary exclusion diagnostics. Many doctors lack the necessary knowledge to do this. It often takes years for patients to receive a diagnosis. There is currently no causal treatment. Adults with ME/CFS currently have little prospect of improvement and reintegration into working life. The prognosis for children and adolescents is better, but long-term absences from school are the norm. For most patients, participation in normal life with a job, education, friends, sports, hobbies, etc. is not possible.
There are over 40 million patients with ME/CFS worldwide. In Germany, it is assumed that over 620,000 people are affected. Some of those affected by long COVID also develop ME/CFS. The medical and psychosocial care situation for patients is insufficient. Misdiagnoses often occur, resulting in consequential damage. Economic factors are also critical, as workers are absent from work due to illness and training programmes are not started or completed.
All the figures and sources mentioned can be found on our website: https://mecfs-research.org/was-ist-me-cfs/
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