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 long- or post-COVID syndrome suffer from ME/CFS. Patients have a very low quality of life and often a high degree of disability. Participation and quality of life are often significantly limited even in very young patients.
60% of all patients are unable to work, many of them are house bound or bedridden. In Germany, about 300,000 people were already affected by ME/CFS before the COVID pandemic, including over 40,000 children. Worldwide, it is estimated that more than 17 million people suffer from ME/CFS. In addition, some of those affected by Long COVID also develop ME/CFS. Hence the number of ME/CFS cases is expected to double due to the pandemic.
The medical care situation is absolutely insufficient. Faulty diagnosis and consequential damage to patients are not uncommon. The high number of people affected is an increasingly critical factor for all areas of medical and psycho-social care. It's also increasingly an economic challenge, due to the loss of productive labour and education caused by the disease. The economic damage caused by the approx. 300,000 ME/CFS patients in Germany (before the pandemic!) was estimated at over 7.4 billion euros per year (Source). These values will also rise sharply 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).