What is ME/CFS?
ME/CFS is "the last major under-researched disease"
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a severe multisystem disease that usually occurs after an infection but can also be triggered by other factors.
In Germany, the number of people living with ME/CFS in 2024 was more than 650,000. Some patients who develop Long COVID or post-COVID syndrome after COVID-19 eventually fulfil the diagnostic criteria for ME/CFS. Already prior to the COVID-19 pandemic around 400,000 people in Germany were living with ME/CFS. Globally, the numer of people affected by the disease could be significantly exceeding 40 million.
There are currently no recognised therapies or drugs to effectively treat or cure the underlying disease mechanisms of ME/CFS. The provision of and access to medical and social care are inadequate. Misdiagnoses and subsequent complications are not uncommon. The high number of affected individuals is an increasingly critical factor for all areas of care, as well as the economy, due to the loss of training and labor.
Providing funding for basic research to identify causative disease mechanisms, the development of biomarkers, building-up diagnostic capacities and for clinical and translational research to develop effective therapies could significantly reduce the costs of these diseases and improve the quality of life of hundreds of thousands of people in Germany (and millions of people worldwide).
A severe hardship for patients and their relatives
People living with ME/CFS suffer from a pronounced worsening of their symptoms after minor physical or mental exertion, so-called post-exertional malaise (PEM). In addition to the main symptom of PEM, the complex clinical picture of ME/CFS includes severe fatigue (pathological, persistent exhaustion), low exercise tolerance, muscle weakness, cognitive dysfunction, pronounced pain, sleep disturbances, circulatory problems, hypersensitivity to sensory stimuli, and a dysfunction of the immune system and the autonomic nervous system.
ME/CFS patients often have a very low quality of life and, not infrequently, a high degree of disability. Approximately two-thirds of all people living with ME/CFS are unable to work, and many are confined to their homes or beds. Many severely affected adults live alone and lack adequate medical and social care.
Overall participation and quality of life are often significantly limited, especially for children, adolescents, and young adults living with ME/CFS. Due to the lack of adequate care, care for patients, especially those with severe or even the most severe symptoms, is often provided by family members and relatives. This often also leaves the living situation of caregivers in a precarious state.
Our FAQ / Information on ME/CFS, Long COVID, post-COVID syndrome (see below) provides additional insights on the disease, including sources and literature.
Societal costs in the order of billions
Like Long COVID and post-COVID syndrome, ME/CFS, too, has long been suspected of causing significant societal costs. Until recently, neither the total number of people living with either of these diseases nor the extent of the economic, social and medical costs that both diseases cause in Germany were known.
A new report published jointly by the ME/CFS Research Foundation and Risklayer in May 2025 is the first to provide a holistic model of the number of people living with ME/CFS or Long COVID and the costs associated with these debilitating diseases in Germany.
The report's findings paint a grim picture: In the five-year period between 2020 and 2024, Long COVID and ME/CFS cost Germany more than 250 billion Euros. In 2024 alone, Long COVID and ME/CFS cost 63.1 billion Euros, equivalent to 1.5% of the country's gross domestic product (GDP) that year. In total, more than 1.5 million people in Germany were living with either Long COVID or ME/CFS at the end of 2024.
According to the model, the occurrence of ME/CFS in Germany alone resulted in societal costs of 30.9 billion Euros in 2024, with more than 650,000 people affected. In fact, international experts previously predicted that the already relatively high number of people living with ME/CFS in the general population would likely increase significantly with the spread of SARS-CoV-2. Since COVID-19 is now endemic and there are currently no effective therapies or cures, it can be concluded that the issue of Long COVID and ME/CFS will not resolve itself, and the associated costs will likely increase or remain at a stable, high level over time.
FAQ: Information on ME/CFS, Long COVID, post-COVID syndrome
Please click on the questions for answers and more information.
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex, severe, and chronic disease of the nervous and immune systems. ME/CFS predominantly develops post-infectiously, including as a result of COVID-19. It is considered the most severe form of post-COVID syndrome. ME/CFS patients suffer from pronounced physical and cognitive symptoms, a very low quality of life, and often have a high degree of disability (1, 2). The quality of life of ME/CFS sufferers is, on average, lower than that of multiple sclerosis, stroke, or lung cancer patients (3). 60–73% of all people living with ME/CFS are unable to work, and one-quarter of those affected can no longer leave their homes (4–7). Many patients are bedridden and dependent on care (2).
The cardinal symptom of ME/CFS is severe exercise intolerance with worsening symptoms after daily activities, so called post-exertional malaise (PEM). Other major symptoms include severe fatigue (pathological, persistent exhaustion), cognitive impairment, pain, muscle weakness, and circulatory problems (1, 2).
The diagnosis of ME/CFS is complex due to the lack of specific biomarkers (especially multidisciplinary exclusion diagnostics) and there is currently no causal therapy. The care situation is inadequate, too. Misdiagnoses and resulting negative health outcomes are not uncommon. Adults with ME/CFS have little prospect of recovery and reintegration into working life. The prognosis for children and adolescents is considered to be somewhat better. Long school absences are the rule nevertheless. For most of those affected, participation in normal life, including work, education, and social life is not possible.
Sources:
1. https://cfc.charite.de/fuer_patienten/literatur_und_empfehlungen_fuer_patienten (external link)
2. https://www.mecfs.de/was-ist-me-cfs (external link)
3. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421 (external link)
4. https://www.tandfonline.com/doi/full/10.1080/21641846.2014.978109 (external link)
5. https://academic.oup.com/aje/article/185/8/617/3073694 (external link)
6. https://nap.nationalacademies.org/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness (external link)
7. https://journals.sagepub.com/doi/10.1177/1742395316644770 (external link)
Statements in the text above can also be found in the statement by Prof. Carmen Scheibenbogen and Prof. Uta Behrends from the ME/CFS hearing of the German Bundestag Health Committee (April 2023): https://www.bundestag.de/resource/blob/943054/d6c654c3cabe15eb6f3f194a7fdd12d6/20_14_0095-7-_ESVe-Carmen-Scheibenbogen-und-Uta-Behrends_ME-CFS_nicht-barrierefrei-data.pdf (external link)
In Germany, more than 650,000 people were living with ME/CFS in 2024. Before the COVID-19 pandemic, approximately 400,000 people with ME/CFS were already receiving medical attention in Germany (1).
The number of children and adolescents living with ME/CFS in Germany was estimated at 40,000 prior to 2020. Experts expect this number to have doubled due to the COVID-19 pandemic (2). It can be assumed that approximately 80,000 children and adolescents in Germany are currently living with ME/CFS.
Some people living with Long COVID or post-COVID syndrome meet the diagnostic criteria for ME/CFS. Since SARS-CoV-2 is now endemic, a steadily increasing number of people with ME/CFS (as a result of COVID-19) is expected in Germany and worldwide. In addition, ME/CFS cases also continue to arise as a result of other infectious diseases and triggers.
Sources:
1. https://mecfs-research.org/costreport-long-covid-and-mecfs
2. https://www.mecfs.de/was-ist-me-cfs (external link)
In connection with a previous SARS-CoV-2 infection, various long-term health effects have been observed, which are summarised under the term Long COVID. These are health complaints that persist or reappear beyond the acute phase of a SARS-CoV-2 infection of 4 weeks. These can affect different organ systems, cause different symptoms and have different causes.
Post-COVID syndrome refers to symptoms that are still present more than 12 weeks after the onset of SARS-CoV-2 infection and cannot be explained in any other way. Long COVID therefore includes both symptoms that persist after an acute COVID-19 illness 4 to 12 weeks after the onset of symptoms and post-COVID syndrome. Symptoms of Long COVID or post-COVID Syndrome include fatigue (pathological exhaustion), shortness of breath, cognitive dysfunction (“brain fog”), memory problems, muscle pain and spasms, but also post-exertional malaise (PEM), the cardinal symptom of ME/CFS (2).
A data model published in May 2025 by the ME/CFS Research Foundation and Risklayer, concludes, based on the current state of scientific literature, that by the end of 2024, more than 870,000 people in Germany were living with Long COVID or post-COVID syndrome. This resulted in societal costs of 32.2 billion Euro (2).
A proportion of people with post-COVID syndrome eventually meet the diagnostic criteria for ME/CFS after 6 months. It is estimated that approximately 1 in 5 people with long-term post-COVID syndrome meet the criteria for ME/CFS. ME/CFS is considered the most severe form of post-COVID syndrome (2).
Sources:
1. https://www.rki.de/DE/Themen/Infektionskrankheiten/Infektionskrankheiten-A-Z/C/COVID-19/Long-COVID/Inhalt-gesamt.html (external link)
2. https://mecfs-research.org/costreport-long-covid-and-mecfs
ME/CFS is one of the diseases with the lowest quality of life. In some cases, it is lower than in patients with stroke, heart failure, or cancer. Various studies have measured the lowest vitality and functionality levels of any chronic disease in ME/CFS patients (1).
The disease ME/CFS was included by the Wordl Health Organization (WHO) as a neurological disease in the International Classification of Diseases in 1969 (ICD-10 G93.3). Nevertheless, little research was carried out on this topic for decades. Biomedical and clinical research, in particular, lay dormant for a long time. Experts believe that one reason for the lack of research is that there was little government funding available internationally for research in this area. In Germany, there was no official research funding for ME/CFS until 2020.
Furthermore, most physicians are still inadequately trained to diagnose and treat ME/CFS. In Germany, there are currently only two specialised outpatient clinics (in Berlin and Munich), and the diagnostic and care situation for patients is inadequate (2, 3). Similar to physicians, most medical assessors also have insufficient knowledge of ME/CFS (4). Many assessment procedures do not adequately consider the symptoms of ME/CFS or classify them incorrectly. As a result, those affected are denied medical and social services or are faced with enormous difficulties. Care, nursing, and social services fall primarily on relatives, families, and friends.
The high number of those affected is an increasingly critical factor for all areas of healthcare, as well as economically due to the loss of training and labour. A data model by the ME/CFS Research Foundation and Risklayer estimated the social costs of ME/CFS in Germany at 30.9 billion Euro for 2024. Although the model only considers historical data, it can be assumed that the number of active ME/CFS cases will increase by at least around 34,000 additional cases between 2025 and 2028 due to the Long COVID cases that have already occurred in 2024. Since COVID-19 is now endemic and there are currently neither effective therapies nor a cure, it can be concluded that the problem of Long COVID and ME/CFS will not resolve itself. Compared to the total costs incurred by Long COVID and ME/CFS over the last five years (around 250 billion Euro), the German Federal Government's expenditure on research measures to combat the negative effects of these two diseases over the same period (around 200 million Euro) pales in comparison (5).
Sources:
1: https://www.mecfs.de/daten-fakten (external link)
2: https://cfc.charite.de (external link)
3: https://mcfc.mri.tum.de (external link)
4: https://www.bundestag.de/resource/blob/943054/d6c654c3cabe15eb6f3f194a7fdd12d6/20_14_0095-7-_ESVe-Carmen-Scheibenbogen-und-Uta-Behrends_ME-CFS_nicht-barrierefrei-data.pdf (external link)
5. https://mecfs-research.org/costreport-long-covid-and-mecfs
ME/CFS has not been adequately studied for decades. As a result, research into possible disease mechanisms and potential treatment options is still in its infancy. In connection with this, the healthcare situation and social security for people living with ME/CFS remain inadequate.
Only since 2020, with the onset of the COVID-19 pandemic, federal and state governments in Germany started to proactively raise awareness and improve the general care situation for people living with ME/CFS, and especially for people living with Long COVID. This also applies to the provision of funding for basic research as well as clinical and epidemiological research projects. Nevertheless, the overall efforts and the amount of funding provided to promote and improve research, care, and treatment for ME/CFS (historically and to date), as well as for Long COVID, remain disproportionately low compared to the costs, and even compared to similarly common and comparably severe illnesses.
The long-term and appropriate provision of funding for basic, clinical, and translational research to identify causative disease mechanisms, discover biomarkers, build diagnostic capacities, and develop effective therapies, including novel drugs, could significantly improve the lives of the approximately 650,000 people currently living with ME/CFS in Germany. It could also significantly reduce the incurred societal costs. What is needed is significantly more investment by public bodies and, in particular, the active engagement of the pharmaceutical industry to successfully develop mass-marketable diagnostic and therapeutic options and make them accessible to a broad patient population. Funding initiatives by the Federal Ministry of Research, Technology and Space, such as the joint projects on ME/CFS disease mechanisms and the National Clinical Studies Group (NKSG), are important first steps in this direction (1, 2). More long-term, large-scale funding measures of this kind are urgently needed.
In order to be able to solve the central issue of the disease – the lack of understanding of the disease mechanisms and suitable treatment options – stable framework conditions for a long-term and sustainable ME/CFS research landscape in Germany must be created. As the ME/CFS Research Foundation, we see ourselves, with the financial resources available to us, in the role of supporting key research initiatives in Germany. In doing so, we assume the role of funding complementary research projects that enable partial aspects or previously underfunded sub-projects within projects already financed with public funds. In addition, we fund exploratory research on topics and research questions that have not yet been researched sufficiently or at all. With our commitment, we are thus making an important contribution to further expanding the ME/CFS research field (3).
Sources:
1. https://www.gesundheitsforschung-bmbf.de/de/pathomechanismen-von-me-cfs-18010.php (external link)
2. https://www.gesundheitsforschung-bmbf.de/de/nationale-klinische-studien-gruppe-nksg-post-covid-syndrom-und-me-cfs-15737.php (external link)
More information on the clinical picture of the disease is available, for example, on the website of the Charité Fatigue Center (external link).
Additional information can be found on the website of the German Association for ME/CFS (external link), which provides a range of information on the disease, data and facts, the current state of research and political developments surrounding ME/CFS and Long COVID (in German).
Unfortunately, the ME/CFS Research Foundation is unable to answer questions about medical care or treatment recommendations. We cannot, and are not allowed to, recommend any medical treatments or physicians.
The Charité Fatigue Center provides general information for patients (external link) and an overview of ME/CFS support groups and patient organisations in Germany. Information on therapy approaches and research is available in layman's terms on the English-language website healthrising.org (external link).
We plan to expand the information on these topics on our website at a later date.
We regularly add items and content to our list of FAQs. If you have a question that has not yet been asked or answered adequately here, please simply send us an e-mail: faq@mecfs-research.orgWe will then respond to your question as soon as possible.
More information / FAQ on other topics can be found on our following websites:
