Press release
International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID
Berlin, 1 September 2025
More than 60 leading international scientists and medical professionals have signed a new Declaration. Sie fordern ein global koordiniertes Vorgehen bei der Erforschung und Entwicklung von Medikamenten für ME/CFS (Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom) und Long COVID.
With the "International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID," leading experts from 14 countries, including the United States, Japan, Australia, and Europe, have joined forces and made demands to combat these serious illnesses, for which there are still no recognised treatment options.
Prof Carmen Scheibenbogen first presented the Declaration on 12 May 2025 at the International ME/CFS Conference 2025 in Berlin. Since then, the Declaration has garnered growing international support.
Scientists call for more support from the pharmaceutical industry
The declaration highlights the growing health crisis caused by ME/CFS and Long COVID and emphasises the urgent need to advance biomedical research and drug development worldwide. In particular, governments and international bodies are called upon to prioritise research funding for these diseases.
The signatories emphasise that more clinical and translational studies are needed to investigate potential treatment options. Studies are also needed on the efficacy of drugs that have already been developed for other diseases. Incentives must be created for pharmaceutical and biotechnology companies to actively participate and invest in research and drug development.
Leading researchers’ comments:
Carmen Scheibenbogen (website, external link), head of the Immunodeficiency and Post-Infectious Diseases Unit and the Charité Fatigue Centre (CFC) at Charité – Universitätsmedizin Berlin and initiator of the declaration, describes her motivation for a global call for increased international cooperation: “Our understanding of what is causing ME/CFS and Long COVID has made notable progress in the past five years. We are now more confident than ever in being able to identify targets for biomedical treatments. Collectively, we must now concentrate our efforts on pinpointing suitable biomarkers and developing potentially curative treatments. This needs to happen globally and in close cooperation with governments and pharmaceutical companies. As the signatories of the International Declaration, we call on all potential partners to join us in this effort.”
Ziyad Al-Aly (website, external link), Director of the Centre for Clinical Epidemiology, Head of the Research and Development Service at the Veterans Affairs St. Louis Health Care System and Professor of Medicine at Washington University in St. Louis, USA, emphasises his support for the declaration: “Long COVID and ME/CFS mount a significant burden not only on healthcare systems, but also on national economies and the society at large. From a public health perspective, it is paramount that we find ways to prevent and effectively treat these conditions. The cost of inaction in this regard would simply be too high. It is essential that funding organisations and private industry answer our call and actively engage with the research and patient community to address this global challenge.”
Akiko Iwasaki (website, external link), Sterling Professor of Immunobiology and Molecular, Cellular and Developmental Biology at Yale University, USA, and signatory to the Declaration, emphasises the need for joint efforts in drug development: “Research and drug development in the field of Long COVID and ME/CFS must be prioritised, if we are to bring effective therapies to the people living with these conditions. I am convinced that, by joining efforts across disciplines and sectors, we will be able to make important strides in this endeavour. Harnessing the expertise and resources available to both basic science and industry will be of central importance. To this end, we are calling for establishing goal-oriented partnerships between academia, biotech and pharmaceutical industry.”
Takashi Yamamura (website, external link), Director of the Department of Immunology at the National Institute of Neuroscience and the Multiple Sclerosis Centre at the National Centre for Neurology and Psychiatry in Tokyo, Japan, who signed the declaration on 12 May, points to the need for greater international cooperation: “We are now rapidly advancing our understanding of ME/CFS and similar infections-associated conditions, including Long COVID. Against this backdrop, I believe there is a growing need for the global research community to come together and jointly elaborate on the way forward in terms of research and treatment development. I am convinced that, by pooling our knowledge and resources across countries, we can create important synergies that will ultimately help us to deliver faster on making therapies available to patients.”
David Putrino (website, external link), Professor of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai, New York, USA, who signed the declaration at the International ME/CFS Conference 2025 in Berlin, emphasises: “There is an urgent need to provide tailored medical care to the millions of people living with post-acute infection syndromes. While some efforts are already underway to find effective treatments, we urgently need more research and clinical trials to achieve timely results. As scientists and doctors, we will do our best to leverage our expertise and advance our understanding on how to diagnose, treat and ultimately prevent these conditions. Establishing partnerships with the private sector can take us a long way in achieving this.”
The “International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID” is an independent initiative of the signatories. The ME/CFS Research Foundation is making the Declaration available on its website on behalf of the signatories, as the document was first presented at the International ME/CFS Conference 2025 (website), which was organised with the support of the Foundation.
The full text and list of all signatories can be found at the following link:
https://declaration.mecfs-research.org/en/declaration
Press contact
Thank you for your interest. Please feel free to contact us, sign up to our press mailing list and subscribe to our newsletter.
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 650,000 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/en/was-ist-me-cfs/