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Regarding the societal costs of ME/CFS and Long Covid , the ME/CFS Research Foundation has conducted an as yet unpublished study.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/
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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, based in Hamburg, funds and supports biomedical research into ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and Long COVID. The aim is to develop diagnostic and therapeutic approaches to improve the current inadequate standard of care. The foundation works closely with researchers and ME/CFS patient organisations.
Due to a lack of research to date, there is still no effective treatment for these common and serious multisystemic diseases. The foundation funds research projects, connects researchers, ensures transparency regarding research progress, and provides facts and resources to raise awareness.
About ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and long COVID:
ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a chronic, severe multisystemic condition characterised by a wide range of disorders, primarily affecting the nervous and immune systems. ME/CFS is predominantly post-infectious in origin, including as a consequence of COVID-19. It is the most severe form of Long COVID. People with ME/CFS experience pronounced physical and cognitive symptoms, a very low quality of life and often a high degree of disability. Between 60 and 75 per cent of all sufferers are unable to work, and many are confined to their homes or beds. The key symptom is severe exercise intolerance with a worsening of symptoms following everyday activities (post-exertional malaise, or PEM for short). Due to the current lack of biomarkers, diagnosing ME/CFS is only possible through a detailed medical history and multidisciplinary diagnostic process to rule out other conditions. Many doctors lack the necessary expertise. It often takes years for those affected to receive a diagnosis. To date, there is no effective treatment. Adults with ME/CFS currently have little prospect of recovery and reintegration into working life. The prognosis is better for children and young people, yet long-term absences from school are the norm. For most sufferers, participation in normal life—including work, education, friends, sport, hobbies, etc.—is not possible.
In Deutschland lag die Zahl der Menschen, die mit ME/CFS leben, im Jahr 2025 bei mehr als 657.000. Ein Teil der durch COVID-19 an Long COVID bzw. Post-COVID-Syndrom erkrankten Personen erfüllt die Diagnosekriterien für ME/CFS. Bereits vor der COVID-19-Pandemie lebten etwa 400.000 Menschen in Deutschland mit ME/CFS. Weltweit liegt die Zahl der Betroffenen bei weit über 40 Millionen. Die medizinische Versorgungslage der Erkrankten ist ungenügend. Oft kommt es zu Fehldiagnosen und daraus resultierenden Folgeschäden.
Die hohe Zahl der Betroffenen ist für alle Bereiche der Versorgung sowie auch ökonomisch, durch den krankheitsbedingten Ausfall von Ausbildungszeit und Arbeitskraft, ein zunehmend kritischer Faktor.
All the figures and sources mentioned can be found on our website: https://mecfs-research.org/was-ist-me-cfs