Email newsletter pointed out that there's a page for tips and materials for fundraising on the ME/CFS Research Foundation website: https://mecfs-research.org/en/support/fundraiser/
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OrganicChilli
Senior Member (Voting Rights)
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Chandelier
Senior Member (Voting Rights)
Slightly off-topic but there’s also the Austrian WE&ME Foundation backed by the Ströck family.
Several of their sons suffer from ME/CFS and at least one of them is quite active on X.
They are doing lots of awesome stuff and maybe someone could reach out to invite him over to S4ME?
Edit: I found his account:
Nitter link for anyone without X.
X link
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OrganicChilli
Senior Member (Voting Rights)
Also a reminder that we have a thread for the German translation: https://www.s4me.info/threads/translating-s4me-fact-sheets-into-german.45331/
OrganicChilli
Senior Member (Voting Rights)
Update: research funding strategy of the ME/CFS Research Foundation
In 2026, our research funding will support projects that, based on the latest scientific findings, address the following aspects:
Elucidation of the disease mechanisms, underlying central ME/CFS symptoms, such as PEM (post-exertional malaise), pain, muscle weakness, cognitive dysfunction, circulatory disorders, sleep disorders and dysautonomia.
Developing reliable diagnostic, prognostic or predictive (taking into account important variables such as sex/gender, age, duration of illness and severity). We focus on projects investigating autoimmunity, immune dysregulation, metabolic disorders, inflammation, vascular dysfunction, and nervous system dysfunction as causal factors in the development and progression of ME/CFS.
Testing innovative, disease-mechanism-targeted drugs and treatment approaches for their suitability for effective and safe treatment of ME/CFS. This includes drugs already approved for other diseases, such as CD19+ or CD20+ B-cell depletion, CD38+ plasmablast/cell depletion, B-cell receptor signalling and granulocyte inhibition, selective B/T-cell depletion, inhibition of plasma cell maturation and GLP-1 receptor agonists, or other promising drug candidates targeting the above-mentioned disease mechanisms.
In 2026, our research funding will support projects that, based on the latest scientific findings, address the following aspects:
Elucidation of the disease mechanisms, underlying central ME/CFS symptoms, such as PEM (post-exertional malaise), pain, muscle weakness, cognitive dysfunction, circulatory disorders, sleep disorders and dysautonomia.
Developing reliable diagnostic, prognostic or predictive (taking into account important variables such as sex/gender, age, duration of illness and severity). We focus on projects investigating autoimmunity, immune dysregulation, metabolic disorders, inflammation, vascular dysfunction, and nervous system dysfunction as causal factors in the development and progression of ME/CFS.
Testing innovative, disease-mechanism-targeted drugs and treatment approaches for their suitability for effective and safe treatment of ME/CFS. This includes drugs already approved for other diseases, such as CD19+ or CD20+ B-cell depletion, CD38+ plasmablast/cell depletion, B-cell receptor signalling and granulocyte inhibition, selective B/T-cell depletion, inhibition of plasma cell maturation and GLP-1 receptor agonists, or other promising drug candidates targeting the above-mentioned disease mechanisms.
OrganicChilli
Senior Member (Voting Rights)
International ME/CFS Conference on 7-8 May 2026 in Berlin, supported by ME/CFS Research Foundation
The fourth instalment of the International ME/CFS Conference, hosted by Charité Fatigue Center (CFC), and organised in cooperation with the ME/CFS Research Foundation, will take place in Berlin on 7-8 May 2026. The two-day hybrid event will once again bring together some of the world’s leading experts in the field of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long COVID/post-COVID syndrome. The event is aimed at a specialist audience and will focus on the latest results from ongoing ME/CFS research, while also covering post-COVID syndrome. The afternoon of day two of the Conference will feature a Symposium for a German speaking audience.
The fourth instalment of the International ME/CFS Conference, hosted by Charité Fatigue Center (CFC), and organised in cooperation with the ME/CFS Research Foundation, will take place in Berlin on 7-8 May 2026. The two-day hybrid event will once again bring together some of the world’s leading experts in the field of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long COVID/post-COVID syndrome. The event is aimed at a specialist audience and will focus on the latest results from ongoing ME/CFS research, while also covering post-COVID syndrome. The afternoon of day two of the Conference will feature a Symposium for a German speaking audience.
OrganicChilli
Senior Member (Voting Rights)
Half-year report winter 2025: what have we achieved so far?
mecfs-research.org
Research Funding
New grants were awarded, including studies at Charité – Universitätsmedizin Berlin on physical and cognitive testing and potential brain imaging biomarkers.
Since its founding, the foundation has co-funded 11 research projects.
A 2026 Research Funding Programme will open with a call for new project proposals.
Networking and Conferences
Plans were announced for the International ME/CFS Conference 2026 in Berlin with live online participation.
The ME/CFS Research Register was expanded to include Norway and Iceland (now covering six countries), acting as a systematic overview of research activities.
Transparency and Information
Research updates and overviews have been published for Germany, Austria, Switzerland, the Netherlands, and now Norway and Iceland.
A major study on the prevalence and economic cost of Long COVID and ME/CFS in Germany (widely cited in media and policy discussions) continued to shape public and political engagement.
International Collaboration
Following the 2025 conference, an International Declaration by leading experts calls for global cooperation to expand research and accelerate development of effective treatments for ME/CFS and Long COVID.
Political and Public Engagement
The foundation participated in government discussions in Germany to support implementation of the “National Decade Against Post-Infectious Diseases,” advocating for better biomarker research, diagnostics, therapies, and patient care.
Fundraising and Awareness
Donations more than doubled in 2025, providing over €1.17 million, with €1.93 million currently available for future research. Fundraising activities and awareness campaigns grew, including collaboration with community and sports initiatives.
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This charity is doing something right when it comes to fundraising. The political landscape is different to the UK and iirc I've read that all major parties mention ME/CFS research in their manifestos and it's often reported on in the media. Doctors still think it's a mental illness and it's very hard to claim benefits, but regardless: could UK charities get some fundraising inspiration?
Halbjahresreport Winter 2025: was haben wir bisher erreicht? - ME/CFS Research Foundation
2025 war ein gutes Jahr – für die ME/CFS- und Long COVID-Forschung. Auch unser Engagement für mehr biomedizinische Forschung war erfolgreich. Dank der guten Arbeit unseres Teams und dem stark wachsenden Spendenvolumen unserer Förder*innen werden wir auch 2026 erneut viele Impulse setzen können...
mecfs-research.org
Research Funding
New grants were awarded, including studies at Charité – Universitätsmedizin Berlin on physical and cognitive testing and potential brain imaging biomarkers.
Since its founding, the foundation has co-funded 11 research projects.
A 2026 Research Funding Programme will open with a call for new project proposals.
Networking and Conferences
Plans were announced for the International ME/CFS Conference 2026 in Berlin with live online participation.
The ME/CFS Research Register was expanded to include Norway and Iceland (now covering six countries), acting as a systematic overview of research activities.
Transparency and Information
Research updates and overviews have been published for Germany, Austria, Switzerland, the Netherlands, and now Norway and Iceland.
A major study on the prevalence and economic cost of Long COVID and ME/CFS in Germany (widely cited in media and policy discussions) continued to shape public and political engagement.
International Collaboration
Following the 2025 conference, an International Declaration by leading experts calls for global cooperation to expand research and accelerate development of effective treatments for ME/CFS and Long COVID.
Political and Public Engagement
The foundation participated in government discussions in Germany to support implementation of the “National Decade Against Post-Infectious Diseases,” advocating for better biomarker research, diagnostics, therapies, and patient care.
Fundraising and Awareness
Donations more than doubled in 2025, providing over €1.17 million, with €1.93 million currently available for future research. Fundraising activities and awareness campaigns grew, including collaboration with community and sports initiatives.
---
This charity is doing something right when it comes to fundraising. The political landscape is different to the UK and iirc I've read that all major parties mention ME/CFS research in their manifestos and it's often reported on in the media. Doctors still think it's a mental illness and it's very hard to claim benefits, but regardless: could UK charities get some fundraising inspiration?
V.R.T.
Senior Member (Voting Rights)
Honestly I swear some doctors are going to need actual deprogramming from experts in helping the victims of cults before they admit it's not psychological. We'll all be lining up to get the treatment and they'll be saying that the treatment is a placebo and that their colleagues administering it are harming us by giving us a drug, and not giving us some lovely GET instead. And those breakthrough basic science findings that took the world by storm? Well, the mind and the body are connected don't you know...
I agree this charity seems to be making all the right moves. I wish I knew how to get something similar going in the UK.
Agree. I’m curious there is a charitee in Germany and France, I don’t know if these are the same ‘group’ or if it’s just ‘charity’ in the general sense of the word and if so there are others in other countries and if those tend be on the better side re: me/cfs?