What is ME/CFS?

ME/CFS - "the last, major disease lacking appropriate research".

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This is a severe disease of the nervous and immune system that usually occurs after an infection. Many people with Post-COVID-Syndrome have ME/CFS. Patients have a very low quality of life and often a high degree of disability. Participation and quality of life are often considerably limited, even in very young patients. 60% of all sufferers are unable to work, many of them are house or bed bound.

In Germany, about 300,000 people were already affected by ME/CFS before the pandemic, including over 40,000 children. Some of the patients affected by Long COVID also develop ME/CFS. In the meantime, more than 500,000 patients in Germany have been counted by health insurance organisations (as of 2021). Worldwide, more than 28 million patients are estimated to be affected.

ME/CFS patient care is currently insufficient. Misdiagnoses and consequential damage are not uncommon. The high number of patients is an increasingly critical factor for all areas of medical and psychosocial care, as well as economically, due to the loss of education and labour caused by the disease. The economic damage of the disease was already estimated at over 7.4 billion euros per year before the pandemic (Source). This estimate of economic damage has also increased considerably due to Long COVID. 


A severe hardship for patients and their relatives

ME/CFS patients experience a marked worsening of their symptoms after low levels of physical or mental exertion (PEM, so-called Post-Exertional-Malaise). The complex clinical picture includes, for example, severe fatigue (pathological, permanent exhaustion), low resilience, cognitive disorders, pronounced pain, circulatory problems, hypersensitivity to sensory stimuli and a disorder of the immune system and the autonomic nervous system.

Participation and quality of life are often significantly limited even in very young patients. Many severely affected adults are alone. Some even live in their bathrooms as they can only walk a few metres to the toilet. Some are also no longer able to do so and are bedridden and artificially fed. Further information on the disease as well as sources can be found at the excellent website of the German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS).

Questions about ME/CFS (FAQ)

Please click on the questions for answers and more information.

On the Website of the German Association for ME/CFS further information on ME/CFS is very well compiled, e.g. on facts & figures, pathophysiology, post-exertional malaise, pacing, orthosatatic intolerance, fatigue, brain fog. 

There you will also find information about Long-COVIDincluding a comparison of symptoms between ME/CFS and Long COVID. 

Unfortunately, no. We are in close contact with medical doctors and researchers, but cannot and must not recommend any particular medical treatments or medical doctors. The Charité Fatigue Centre offers information for patients and an overview of ME/CFS support groups and patient organisations in Germany. Information on therapy approaches and ME/CFS research is available in layman's terms on the excellent blog Healthrising.org (English language only). We intend to build up a range of other "resources" on our website in the near future.

We regularly add to the 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.org   We will then comment on your question as soon as possible.