- 1 Demographics
- 2 Research
- 3 Medical guidelines
- 4 Social security and disability benefits
- 5 Access to care
- 6 Patient groups
- 7 Notable patients
- 8 Notable advocates
- 9 Clinicians
- 10 Clinics
- 11 Documents in German
- 12 Blogs
- 13 Forums
- 14 See also
- 15 References
Demographics[edit | edit source]
It's estimated that around 250.000 people living in Germany suffer from Myalgic Encephalomyelitis, including 40,000 children and adolescents. This represents a prevalence of 0.3% of the German population.
Research[edit | edit source]
Research initiatives[edit | edit source]
Researchers[edit | edit source]
- Patricia Grabowski
- Bhupesh Prusty
- Carmen Scheibenbogen
- Franziska Sotzny
- Helma Freitag
- Madlen Löbel
- Thomas Harrer
- Uta Behrends
Medical guidelines[edit | edit source]
- Müdigkeit – The German guideline "Tiredness" includes a chapter on ME/CFS. The patient organization German Association for ME/CFS successfully lodged a complaint against the methodological shortcomings of the guideline in 2018. This prevented the guideline from issuing binding treatment recommendations with no scientific evidence (GET and CBT) for ME/CFS. The chapter on ME/CFS was officially downgraded to the "authors' opinion".
- Funktionelle Körperbeschwerden – ME/CFS is included in the German guideline "Functional disorders", although this is not in line with the classification by the WHO.
- "Erkenntnisstand zum Chronic Fatigue Syndrome" The Robert Koch Institute (RKI) is the government’s central scientific institution in the field of biomedicine. It issued a report on ME/CFS in 2015. It was based on a literature review that focused on discredited behavioral studies. It issued recommendations that were not evidence-based and possibly harmful to people with myalgic encephalomyelitis. The report was deleted from the website in autumn 2019 (archived version here ).
- Leitlinien für die sozialmedizinische Begutachtung – Sozialmedizinische Beurteilung bei psychischen und Verhaltensstörungen – The Deutsche Rentenversicherung (German pension insurance) includes ME/CFS in its guideline "Socio-medical assessment of mental and behavioral disorders".
Social security and disability benefits[edit | edit source]
Access to care[edit | edit source]
There are no rehabilitation offers for ME sufferers.
Patient groups[edit | edit source]
National groups[edit | edit source]
- Deutsche Gesellschaft für ME/CFS
- Elterninitiative ME/CFS-kranke Kinder und Jugendliche
- Fatigatio e.V.
- Lost Voices Stiftung
- #MillionsMissing Deutschland
Regional groups[edit | edit source]
- Netzwerk-CFS (Hannover)
Notable patients[edit | edit source]
Notable advocates[edit | edit source]
Clinicians[edit | edit source]
- Andreas Grothusen, Hamburg – Doesn't take on new patients
Clinics[edit | edit source]
- Charité Fatigue Centrum, Berlin – The outpatient clinic offers a one-time appointment for diagnosis for ME/CFS patients from Berlin/Brandenburg, if they suffer from frequent infections
- MRI Chronisches Fatigue Centrum, Munich – Outpatient clinic for children, adolescents and young people up to age 25
- Spezialklinik Neukirchen, Neukirchen – Clinic for "environmental illness"
Documents in German[edit | edit source]
- The website of the Charité Fatigue Centrum at the Charité Berlin offers information for patients and doctors.
- The Deutsche Gesellschaft für ME/CFS cooperated with the Charité Berlin to offer information for medical professionals.
- Bell-Skala (in English: Bell disability scale)
- Kanadische Konsenskriterien (in English: Canadian Consensus Criteria)
- Internationale Konsenskriterien (in English: International Consensus Criteria)
- Internationale Konsensleitlinie für Ärzte (IC-Primer) (in English: International Consensus Primer for Medical Practioners)
Blogs[edit | edit source]
Forums[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
- Scheibenbogen et al. (2014), Chronisches Fatigue-Syndrom. Heutige Vorstellung zur Pathogenese, Diagnostik und Therapie, tägl. prax. 55, 567–574, Hans Marseille Verlag GmbH, München.
- "AWMF: Detail". www.awmf.org. Retrieved August 14, 2019.
- "New German guideline for ME published today". Science for ME. Retrieved August 14, 2019.
- "DEGAM veröffentlicht revidierte Fassung der Leitlinie »Müdigkeit«". Deutsche Gesellschaft für ME/CFS. May 22, 2018. Retrieved August 14, 2019.
- admin (June 5, 2019). "Sozialmedizinische Begutachtung". DRV (in Deutsch). Retrieved August 15, 2019.
- Stigler, Rolf-Dietrich. "Charité Fatigue Centrum". Charité Fatigue Centrum (in Deutsch). Retrieved August 15, 2019.
- "Informationen für Ärztinnen und Ärzte – Deutsche Gesellschaft für ME/CFS". Retrieved August 15, 2019.
- "Bell-Skala" (PDF).
World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.