ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is a complex, severe disease of the nervous and immune system. ME/CFS is predominantly post-infectious, also as a result of COVID-19, and is the most severe form of post-COVID syndrome. ME/CFS sufferers have pronounced physical and cognitive symptoms, a very low quality of life and often a high degree of disability. 60-75% of all sufferers are unable to work, many of whom are house or bed bound. The main symptom is severe exercise intolerance with worsening of symptoms after everyday activities (post-exertional malaise = PEM).

The diagnosis of ME/CFS is complex due to the lack of specific biomarkers (especially the multidisciplinary exclusion diagnostics) and there is currently no causal therapy. The care situation is currently inadequate. Misdiagnosis and secondary damage are not uncommon. Adults with ME/CFS currently have little prospect of recovery and reintegration into working life. The prognosis for children and adolescents is considered better. Long school absences are the rule. For most of those affected, participation in normal life with work, education, friends, sport, music, etc. is not possible.

The high number of people affected is an increasingly critical factor for all areas of medical and psychosocial care as well as economically, due to the loss of training and labour as a result of illness.

Sources:

1. Information on the clinical picture can be found, for example, on the website of the Charité Fatigue Center: https://cfc.charite.de/fuer_patienten/literatur_und_empfehlungen_fuer_patienten (external link)

All statements in the text above can also be found in the statement by Prof. C. Scheibenbogen and Prof. U. Behrends at the ME/CFS hearing of the German Bundestag Health Committee (April 2023): https://www.bundestag.de/ausschuesse/a14_gesundheit/oeffentliche_anhoerungen/936116-936116. Directly to the download of the statement here.

2. Zur Aussage “The quality of life of ME/CFS patients is on average lower than that of multiple sclerosis, stroke or lung cancer patients": https://pubmed.ncbi.nlm.nih.gov/26147503/

3. zur Aussage “60% bis 73% der der Betroffenen sind arbeitsunfähig”: 
- Estimate 60% (2014): https://www.researchgate.net/publication/273311381_Chronic_fatigue_syndrome_and_co-morbid_and_consequent_conditions_evidence_from_a_multi-site_clinical_epidemiology_study
- Estimate 73% (2017): https://academic.oup.com/aje/article/185/8/617/3073694

4. zur Aussage “25% of those affected can no longer leave the house, many are bedridden and in need of care" 
- Study (2015): https://pubmed.ncbi.nlm.nih.gov/25695122/ 
- Study (2016): https://journals.sagepub.com/doi/10.1177/1742395316644770

In Germany, over 620,000 people were affected by ME/CFS in 2023 (source 1). This includes approximately 80,000 children and adolescents. Internationally, over 42 million people have ME/CFS (source 2). As a result of the pandemic, the number of people affected in Germany is currently expected to rise further, as some of those affected by long Covid also develop ME/CFS. 60-75% of all sufferers are unable to work, many of whom are housebound (source 3).

Sources:

1: The statement by the National Association of Statutory Health Insurance Physicians (KBV) at the ME/CFS hearing of the German Bundestag's Health Committee (April 2023) puts the number of sufferers at 500,000 for 2021: https://www.bundestag.de/resource/blob/943000/60468062de2e557ef6436afb4e5c9173/20_14_0095-5-_Kassenaerztliche-Bundesvereinigung_ME-CFS_nicht-barrierefrei-data.pdf (external link)

Update: In Germany, 620,000 people with ME/CFS visited a doctor's office
at least once in 2023. This was reported to us by the National Association of Statutory Health Insurance Physicians (KBV) in response to our enquiry (see also https://www.riffreporter.de/de/wissen/mecfs-long-covid-krankheitsfaelle-kbv-behandlung (external link)).

2: Extrapolation based on the figure of 620,000 sufferers (Germany) and various international estimates that assumed 17 million ME/CFS sufferers before the pandemic.

3. zur Aussage “25% of those affected can no longer leave the house, many are bedridden and in need of care" 
- Study (2015): https://pubmed.ncbi.nlm.nih.gov/25695122/ (external link)
- Study (2016): https://journals.sagepub.com/doi/10.1177/1742395316644770 (external link)

ME/CFS is one of the diseases with the lowest quality of life of all. In some cases, it is lower than in patients who have had a stroke, heart failure or cancer. Various studies have measured the lowest vitality and functionality scores of all chronic diseases in patients with ME/CFS (Source 1). Adults with ME/CFS currently have little prospect of improvement and reintegration into working life. The prognosis for children and adolescents is considered better. Long school absences are the rule. For most patients, participation in normal life with work, education, friends, sports, music, etc. is not possible (source 2, also for the following statements).

The disease ME/CFS was included by the WHO as a neurological disease in the International Classification of Diseases in 1969 (ICD 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.

In addition, most doctors are still inadequately trained to diagnose and treat ME/CFS. There is a lack of specialised outpatient clinics (in Germany, these only exist in Berlin and Munich). The diagnosis and care situation for patients is very poor. Just like doctors, most medical experts advising on social help/care requests are not sufficiently familiar with ME/CFS. Often, their considerations do not take sufficient account of the symptoms of ME/CFS. As a result, medical and social benefits are withheld from patients or made extremely difficult (e.g. reimbursement of wheelchairs, care services, recognition of the degree of disability, early retirement, ...). Care, nursing and social services are predominantly a burden on relatives, family and friends. Many families and partnerships break down due to the combination of overload, lack of recognition and lack of prospects. The most common cause of death among ME/CFS patients is suicide due to the lack of prospects.

Sources:

1: see chart "ME/CFS - Quality of life" and further data on the website of the German Society for ME/CFS: https://www.mecfs.de/daten-fakten/ (external link)

2: Statement by Prof C. Scheibenbogen and Prof U. Behrends as part of the hearing on ME/CFS in the Health Committee of the German Bundestag (April 2023): https://www.bundestag.de/ausschuesse/a14_gesundheit/oeffentliche_anhoerungen/936116-936116 (external link)
Download link of the statement here (external link) since 2017.

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 also have different causes.

Source: RKI - Coronavirus SARS-CoV-2 - Long COVID (as of 22 August 2023), https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html (external link)

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-19 syndrome".

In a study from Germany, the frequency of post-COVID-19 in the period of 6 to 12 months after a SARS-CoV-2 infection is estimated to be at least 6.5% in predominantly non-hospitalised patients. Analyses of routinely collected outpatient data from statutory health insurance in the four billing quarters in 2022 arrive at roughly similar estimates of the frequency of a post-COVID-19 condition, ranging from 7% to 13%. However, it can be assumed that the prevalence of long COVID is rather underestimated overall on the basis of billing data from social insurance providers, as not all people with long COVID are recorded here.

Source: RKI - Coronavirus SARS-CoV-2 - Long COVID (as of 22 August 2023), https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html (external link)

More information on the clinical picture is available, for example, at the website of the Charité Fatigue Center (external link).

Also the website of the German Association for ME/CFS (external link) provides very good information on ME/CFS, e.g. on data & facts, pathophysiology, post-exertional malaise, pacing, orthosatic intolerance, fatigue, brain fog. 

There you will also find information about Long-COVID (externer Link), inkl. einem Vergleich der Symptome zwischen ME/CFS und 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 (externer Link) und eine Übersicht der ME/CFS Selbsthilfegruppen und Patientenorganisationen in Deutschland. Informationen zu Therapieansätzen und Forschung sind laienverständlich auf dem amerikanischen Blog Healthrising.org (externer Link) zu finden. Wir planen später ein Angebot an weiteren “Ressourcen” auf unserer Website aufzubauen.

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