Press release
International ME/CFS Awareness Day on 12 May
Hamburg 29. April 2024
Buildings and landmarks are bathed in blue light, protesters gather for funeral processions and lie down in demonstration. They want more research, recognition and care.
The initiative #LiegendDemo ( "horizontal demo") is organising simultaneous demonstrations in twelve German cities (including Hamburg, Berlin, Freiburg, Cologne and Stuttgart) on 11 May from 1.00 pm to 4.00 pm. For their relatives and friends, the demonstrators will lie down on the tarmac and remain silent. The silent demonstrations highlight the situation of those suffering from ME/CFS, who are usually unable to get up and lie in darkened rooms in their beds and are therefore invisible. Funeral processions and lying-down demonstrations also attracted attention in March and February.
In more than 30 cities, public buildings, landmarks and the windows of ME/CFS patients and their supporters will shine in blue light. With this campaign, the LightUpTheNight4ME initiative is drawing attention to the serious multi-system disease ME/CFS.
Liegend-Demos und LightUpTheNight4ME Aktionen im Mai 2023. Fotos zur Verfügung gestellt von den beiden Initiativen.
The conference of the UniteToFight wird am 15. und 16. Mai 2024 weltweit online stattfinden. Engagierte Mediziner:innen, Forschende und Betroffene kommen zusammen und diskutieren innovative Lösungen, um komplexe, chronische Krankheiten wie Long COVID und ME/CFS aus ihrem Schattendasein zu holen. Das Programm umfasst Expertenwissen, persönliche Geschichten und Forschungsaktivitäten von vier Kontinenten (Europa, USA, Afrika, Australien).
In a performance on 10 and 11 May, the Ost-Passage Theatre in Leipzig is bringing the long-term consequences of Covid-19 to the stage in a drastic way. "Crash" is a critical reflection on scientific and political entanglements in dealing with the disease and is based on the experiences of patients.
“Es beeindruckt mich sehr, wie viele Menschen sich engagieren und auf die Straße gehen, bzw. sich auf die Straße legen oder sich auf andere Weise für mehr Bekanntheit von ME/CFS einsetzen. Unser Beitrag ist, die support research with donations sowie Vernetzung und Transparenz über alle Forschungsaktivitäten zu schaffen. Dafür haben wir z.B. das ME/CFS Research Register , for example, and provide information on the status of research.” Jörg Heydecke, Gründer und Geschäftsführer der Stiftung (LinkedIn Profil). Aktuell unterstützt die ME/CFS Research Foundation zwei Forschungsprojekte in Berlin and Munich. Weitere Projektförderungen sind in Vorbereitung.
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Further information on ME/CFS, the foundation and current media coverage can be found in the press section of our website: https://mecfs-research.org/press/
Donation info: https://mecfs-research.org/spenden/
Donation account: DE35 2004 0000 0628 5316 00 (Commerzbank)
ME/CFS Research Foundation is a non-profit limited liability company and fulfils the statutory requirements according to §§ 51, 59, 60 and 61 AO (German tax laws). It may issue donation receipts within the meaning of Section 10b of the German Income Tax Act.
About ME/CFS Research Foundation
Die ME/CFS Research Foundation fördert den Auf- und Ausbau biomedizinischer Forschung zum Krankheitsbild ME/CFS (Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom). Aufgrund unzureichender Forschung gibt es bis heute keine ursächliche Therapie dieser häufigen komplexen Multisystem-Erkrankung. Es bedarf dringend weiterer Maßnahmen um den considerable global backlog in der ME/CFS-Forschung zu schließen und den Versorgungsnotstand entgegen wirken.
The foundation cooperates with ME/CFS patient organisations that have long been active in improving the situation. Initially focussing on Germany, this commitment will later be extended to other EU countries.
The foundation cooperates with ME/CFS patient organisations that have long been active in improving the situation. Initially focussing on Germany, this commitment will later be extended to other EU countries.
About ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and long COVID:
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 to 75 per cent 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 (PEM = post-exertional malaise). The diagnosis of ME/CFS is complex due to the lack of a biomarker (cross-domain exclusion diagnostics), and there is currently no causal therapy. Adults with ME/CFS currently have little prospect of improvement and reintegration into working life. The prognosis is better for children and adolescents, but long-term school absences are still the rule. For most of those affected, participation in normal life with work, education, friends, sport, music, etc. is not possible.
In Deutschland waren bereits im Jahr 2021 über 500.000 Menschen von ME/CFS betroffen. International sind über 34 Millionen Menschen an ME/CFS erkrankt. In Folge der Pandemie rechnet man aktuell bereits mit mehr als 600.000 Betroffenen in Deutschland, da ein Teil der von Long COVID Betroffenen ME/CFS entwickelt.
The medical and psychosocial care available to sufferers is inadequate. There are often misdiagnoses and consequential damage as a result. Economic factors are also critical, as labour is lost due to illness and training is not started or completed.
Mehr Informationen unter: https://mecfs-research.org/en/was-ist-me-cfs/
