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.

Source: 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

Download link of the statement here.

In Germany, over 500,000 people were affected by ME/CFS in 2021 (source 1). This includes around 65,000 children and adolescents. Internationally, over 34 million people have ME/CFS (source 2). As a result of the pandemic, over 600,000 people are currently expected to be affected in Germany, as some of those affected by Long COVID will also develop ME/CFS. 60-75% of all sufferers are unable to work, many of whom are house or bed bound.

Sources:

1: Statement by the Association of Statutory Health Insurance Physicians as part of the ME/CFS hearing in the Health Committee of the German Bundestag (April 2023): https://www.bundestag.de/resource/blob/943000/60468062de2e557ef6436afb4e5c9173/20_14_0095-5-_Kassenaerztliche-Bundesvereinigung_ME-CFS_nicht-barrierefrei-data.pdf

2: Extrapolation based on the number of 500,000 people affected (Germany) and various international estimates, which assumed 17 million people affected by ME/CFS before the pandemic.

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/

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
Download link of the statement here.

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

Post COVID syndrome refers to symptoms that are still present more than 12 weeks after the start of the SARS-CoV-2 infection and cannot be explained in any other way. "Long COVID" therefore includes both symptoms that persist 4 to 12 weeks after the onset of symptoms following an acute COVID-19 illness 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

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.