Press release
Sour makes visible - #LemonChallengeMECFS raises awareness for ME/CFS
Hamburg 23 December 2024
On 6 December 2024 at 1:07 p.m., the ME/CFS Research Foundation launched the #LemonChallengeMECFS. Hundreds have already bitten the lemon for attention and donations for people with ME/CFS.
With the #LemonChallengeMECFS, the MECFS Research Foundation aims to raise public awareness, create awareness and raise funds for ME/CFS research.
This severe, often invisible disease affects over 40 million people worldwide – in Germany, the number of sufferers is estimated at over 620,000. Biting into the lemon is just a symbol of the challenge. Those suffering from ME/CFS have pronounced physical and cognitive symptoms and a very low quality of life. Since the disease has been little researched so far, there are no causal therapies. The donations from the challenge will be used to fund further research projects.
The ALS Ice Bucket Challenge was the inspiration for this campaign. Ten years ago, people around the world took part by pouring ice water over themselves.
AI-generated image, for free use. copyrights: ME/CFS Research Foundation
Jörg Heydecke announces the #LemonChallengeMECFS on 6 December 2024
Jörg Heydecke beißt zum Start der #LemonChallengeMECFS als erster in die Zitrone
The #LemonChallengeMECFS goes viral
After just over two weeks, the #LemonChallengeMECFS has generated more than 500 shared lemon bites (social media posts), more than 550,000 impressions and donations of over €25,000 for research. Numerous prominent artists, athletes and politicians are supporting the campaign on Instagram, Facebook, X, Threads, LinkedIn, YouTube and TikTok.
Eckart von Hirschhausen, Johannes Rauch (Austrian Minister of Health), Ricarda Lang (The Greens), Stefan Schwartze (MdB, Federal Government Commissioner for Patients), Klaus Holetschek (former Bavarian Minister of Health), the musicians Rolf Zuckowski owski, Deine Freunde, Johannes Strate (Revolverheld), Die Hamburger Goldkehlchen, as well as Oli P., the Hamburger Tafel, FC St. Pauli Museum, and researchers such as Prof. Dr. Carmen Scheibenbogen from the Berlin Charité. The first videos have also been posted in countries such as Mexico, Denmark, England and Spain.
Jörg Heydecke, founder of the ME/CFS Research Foundation, comments: ‘We are overwhelmed by the initial success of our #LemonChallengeMECFS. We are getting a lot of positive feedback from sufferers, relatives and, increasingly, from the general public. With this challenge, we want to draw attention to the medical and social catastrophe of this severe, common but under-researched multisystemic disease. Thanks to everyone who supports the #LemonChallengeMECFS and our work with donations!’
How it works
Challengers, nominees, supporters and sufferers are called upon to bite (symbolically) into the lemon and to document their reaction to the extreme irritation of the sense of taste via video. Three further people will be nominated to do the same. The campaign is accompanied by an appeal for donations in favour of ME/CFS research.
The non-profit ME/CFS Research Foundation is documenting the campaign on its website, providing guidance and showing selected videos (https://LemonChallengeMECFS.org)
Press contact
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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
The non-profit ME/CFS Research Foundation, based in Hamburg, funds and supports biomedical research into ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and Long COVID. The aim is to develop diagnostic and therapeutic approaches to improve the current inadequate standard of care. The foundation works closely with researchers and ME/CFS patient organisations.
Due to a lack of research to date, there is still no effective treatment for these common and serious multisystemic diseases. The foundation funds research projects, connects researchers, ensures transparency regarding research progress, and provides facts and resources to raise awareness.
About ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and long COVID:
ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a chronic, severe multisystemic condition characterised by a wide range of disorders, primarily affecting the nervous and immune systems. ME/CFS is predominantly post-infectious in origin, including as a consequence of COVID-19. It is the most severe form of Long COVID. People with ME/CFS experience pronounced physical and cognitive symptoms, a very low quality of life and often a high degree of disability. Between 60 and 75 per cent of all sufferers are unable to work, and many are confined to their homes or beds. The key symptom is severe exercise intolerance with a worsening of symptoms following everyday activities (post-exertional malaise, or PEM for short). Due to the current lack of biomarkers, diagnosing ME/CFS is only possible through a detailed medical history and multidisciplinary diagnostic process to rule out other conditions. Many doctors lack the necessary expertise. It often takes years for those affected to receive a diagnosis. To date, there is no effective treatment. Adults with ME/CFS currently have little prospect of recovery and reintegration into working life. The prognosis is better for children and young people, yet long-term absences from school are the norm. For most sufferers, participation in normal life—including work, education, friends, sport, hobbies, etc.—is not possible.
In Deutschland lag die Zahl der Menschen, die mit ME/CFS leben, im Jahr 2025 bei mehr als 657.000. Ein Teil der durch COVID-19 an Long COVID bzw. Post-COVID-Syndrom erkrankten Personen erfüllt die Diagnosekriterien für ME/CFS. Bereits vor der COVID-19-Pandemie lebten etwa 400.000 Menschen in Deutschland mit ME/CFS. Weltweit liegt die Zahl der Betroffenen bei weit über 40 Millionen. Die medizinische Versorgungslage der Erkrankten ist ungenügend. Oft kommt es zu Fehldiagnosen und daraus resultierenden Folgeschäden.
Die hohe Zahl der Betroffenen ist für alle Bereiche der Versorgung sowie auch ökonomisch, durch den krankheitsbedingten Ausfall von Ausbildungszeit und Arbeitskraft, ein zunehmend kritischer Faktor.
All the figures and sources mentioned can be found on our website: https://mecfs-research.org/was-ist-me-cfs