Germany: ME/CFS Research Foundation

We are currently redesigning our website and content strategy – and we need your feedback! Your input will help us make our content clearer, more relevant, and more useful. The survey takes just a few minutes – thank you for participating!
Click to expand...
form.typeform.com

Website Feedback

Wir überarbeiten aktuell unsere Webseite und Content-Strategie – und dafür brauchen wir dein Feedback! Deine Antworten helfen uns, Inhalte klarer, relevanter und hilfreicher zu gestalten. Die Umfrage dauert nur wenige Minuten – danke fürs Mitmachen!
form.typeform.com form.typeform.com
 
Hutan said:
If anyone is in contact with the group, perhaps they could forward our fact sheets and the forthcoming one on information for clinicians to them.
Click to expand...
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
 
Last edited:
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.
 
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.

List of confirmed speakers and chairs (as of 19 December 2025):
Marlen Alisch, Charité – Universitätsmedizin Berlin, Germany
Christopher Armstrong, University of Melbourne, Australia
Uta Behrends, Technical University of Munich, Germany
Carsten Finke, Charité – Universitätsmedizin Berlin, Germany
Michelle James, Stanford University, USA
Alain Moreau, University of Montreal, Canada
Karl J. Morten, Oxford University, UK
Luis Nacul, University of British Columbia, Canada
Chris Ponting, University of Edinburgh, Scotland
Valentina Puntmann, Goethe University Frankfurt, Germany
David Putrino, Icahn School of Medicine, USA
Helena Radbruch, Charité – Universitätsmedizin Berlin, Germany
Keyla Sá, Yale University, USA
Birgit Sawitzki, Charité University Medicine Berlin, Germany
Carmen Scheibenbogen, Charité – Universitätsmedizin Berlin, Germany
Claudia Schilling, Central Institute of Mental Health (CIMH), Germany
Martina Seifert, Charité – Universitätsmedizin Berlin, Germany
Karl Johan Tronstad, University of Bergen, Norway
Maria Vehreschild, University Clinic Frankfurt, Germany
Klaus Wirth, Mitodicure GmbH, Germany
Click to expand...
 
Half-year report winter 2025: what have we achieved so far?

mecfs-research.org

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 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?
 
OrganicChilli said:
Doctors still think it's a mental illness
Click to expand...
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.
 
V.R.T. said:
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.
Click to expand...
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?
 
Apply now: ME/CFS Research Foundation launches 2026 research funding programme

Starting today, scientists and clinicians based in Germany can apply for our research funding programme 2026. A total of €2 million are available for new research projects. €1.5m are set to be invested in clinical research and €0.5m in basic/translational research. The deadline for submitting proposals is 30 April 2026.

The Foundation's Research Funding Programme 2026 is designed to support biomedical research projects addressing unknown or insufficiently understood disease mechanisms, biomarkers, or treatment options for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). The aim is to enable and support projects that, with their results, will significantly contribute to improving the diagnosis and disease-modifying treatment in the coming years.
 
www.berliner-zeitung.de

Therapien gegen Long Covid und ME/CFS: Stiftung fördert Projekte mit Millionen-Betrag

Die Charité und das Berlin Institute of Health gehören zu sieben Einrichtungen, deren Forschung zu den Krankheitsbildern finanziell unterstützt wird.
www.berliner-zeitung.de www.berliner-zeitung.de
Machine Translation:
Therapies for Long COVID and ME/CFS: Foundation Awards Millions in Funding for Research Projects

The Charité and the Berlin Institute of Health are among seven institutions whose research into these conditions will receive financial support.
Click to expand...

…the non-profit ME/CFS Research Foundation has launched a funding program to support research projects at eight institutions across Germany.
Among the recipients are the Charité and the Berlin Institute of Health.

The foundation is investing a total of €2.4 million in research on new therapeutic approaches and the key biological mechanisms underlying these diseases.
Among other areas, researchers are investigating genetic factors, immune processes in children and adolescents, and potential new biomarkers.

The foundation intends for its funding to complement research supported by public funds.
“The funded projects are intended to establish essential scientific foundations on which larger follow-up initiatives can be built in the coming years,” the foundation said in a statement.
Click to expand...
 
More details for each project: https://mecfs-research.org/en/news-researchfunding-projects2026/

AI summary:

TAME – CD19-targeted B-cell therapy for post-infectious autoimmune ME/CFS using tafasitamab

Tests whether the antibody tafasitamab can provide lasting symptom improvement in an autoimmune subgroup of ME/CFS by depleting disease-causing B cells.
The study also evaluates whether it is a more cost-effective alternative to similar B-cell therapies.

Genetic Determinants of Post-Infectious ME/CFS: a 50-Family Study

Investigates families with multiple people affected by ME/CFS to identify inherited genetic risk factors.
The findings could improve understanding of disease biology and support better diagnostics and targeted treatments.

STRAT4PAIS – Immune Endotypes of Paediatric Post-Acute Infection Syndromes

Studies children and adolescents with ME/CFS and related post-infectious illnesses to identify distinct biological subgroups. The goal is to enable more personalised treatments based on the underlying disease mechanisms.

Molecular dissection of cell death-mediated inflammation as a driver of virus-induced ME/CFS

Examines whether abnormal programmed cell death after viral infection drives chronic inflammation in ME/CFS.
The project aims to identify new biomarkers and therapeutic targets by mapping these processes throughout the body.

Myoflame-19 Autoimmune Substudy: GPCR Autoantibodies as Mechanistic Biomarkers of Endothelial Dysfunction in Post-COVID ME/CFS

Investigates whether GPCR autoantibodies contribute to heart and blood vessel dysfunction in post-COVID ME/CFS.
It also assesses whether treatments such as losartan and prednisolone reduce these autoantibodies and improve symptoms.

Analysis of T-cell and B-cell receptor repertoires via single-cell RNA sequencing in patients with ME/CFS and post-COVID syndrome

Uses single-cell sequencing to identify immune cell patterns that could serve as biomarkers for ME/CFS and post-COVID syndrome.
The researchers will also study how immunomodulatory treatments alter these immune signatures and predict treatment response.

MARK-ME – Minimal Biomarker Panels for Diagnosis and Stratification of ME/CFS

Develops simple blood-based biomarker panels to improve the diagnosis of ME/CFS and distinguish biological subgroups.
Machine learning will identify the most informative markers to support more accurate diagnosis and future personalised treatment.
Click to expand...
 
Last edited:
mecfs-research.org

2024-07 Pressemeldung DHG - ME/CFS Research Foundation

PressEmitteilung Die Hamburger Goldkehlchen spenden 50.000 Euro für die Forschung zu ME/CFS Hamburg 14. Juli 2024Zwei „traditionelle Sommerkonzerte“ gaben die Hamburger Goldkehlchen letztes Wochenende im Hamburger Stadtpark. Der legendäre Männerchor aus Hamburg sang für den guten Zweck. Die...
mecfs-research.org mecfs-research.org

"The Hamburg Goldkehlchen" donate 50,000 Euros for research into ME/CFS​


Hamburg 14. Juli 2024

The Hamburg Goldkehlchen gave two "traditional summer concerts" last weekend in Hamburg's Stadtpark.
The legendary male choir from Hamburg sang for a good cause.
The proceeds from Saturday's concert went to the ME/CFS Research Foundation, which funds research into the multisystemic disease ME/CFS.

Both concerts in Hamburg's Stadtpark were sold out within minutes.
On Hamburg's most beautiful open-air meadow, the 70-voice male choir impressed its fans with a rousing concert.
Once again, Die Hamburger Goldkehlchen showed their social commitment and their fans joined in.
At the end of the evening, Ingo Zamperoni was able to hand over 50,000 euros to Jörg Heydecke, founder and managing director of the ME/CFS Research Foundation.
Click to expand...
Goldkehlchen Seppo (Sebastian Orthmann) and Jörg Heydecke are affected: Both have a family member who is seriously ill with ME/CFS or Long Covid.
In a video on Instagram, they call for donations together and explain their commitment.
Choir member Sebastian Orthmann initiated the concert campaign: "We need many more research initiatives for this cruel disease so that ME/CFS can be diagnosed and treated. And we hope that our concert will raise awareness for all those affected."

Jörg Heydecke founded the ME/CFS Foundation 2022.
Click to expand...
 
Subgroups are usually a red flag for me, because it is easy to post-hoc identify positive subgroups due to statistical noise in data that overall points to a negative result for the prior hypothesis.

A closer look at the three projects that mention subgroups:
TAME – CD19-targeted B-cell therapy for post-infectious autoimmune ME/CFS using the monoclonal antibody tafasitamab: open-label follow-up study to a randomized, placebo-controlled Phase II trial of the CD19 antibody inebilizumab

Growing scientific evidence suggests that autoantibodies and dysregulated B cells play a significant role in a subset of ME/CFS patients. In studies [...] immunoadsorption [...] led to marked, though only temporary, clinical improvement in some treated patients. [...] Tafasitamab is being administered as a direct follow-up treatment in a study succeeding the PIONEER trial. [...] The TAME study will involve 38 patients who previously participated in the PIONEER trial.
Click to expand...
Subgroups in PIONEER:
Only a very specific subgroup of patients—specifically those with a positive test result for GPCR autoantibodies and a positive response to immunoadsorption—were eligible for inclusion.
Click to expand...
Believe this stuff may have been discussed on the thread for the foundation's 2026 conference. I should check whether the researchers' claims are supported by their data, but I don't want to watch the videos right now.

STRAT4PAIS — Immune Endotypes of Paediatric Post-Acute Infection Syndromes (PAIS)
The starting point is four post-infectious clinical presentations: abnormal circulatory and cardiac rhythm responses; a persistent immune response to viral infections; autoimmune processes; and headaches in which, amongst other things, increased intracranial pressure can be detected. The aim is to determine whether these four clinical presentations are underpinned by four distinct biological mechanisms.
Click to expand...
Subgroups defined a priori based on presentation.

Analysis of T-cell and B-cell receptor repertoires via single-cell RNA sequencing in patients with ME/CFS and post-COVID syndrome
Detection of functional GPCR autoantibodies correlated with fatigue in PCS patients but so far, it is unclear why only subgroups of patients responded to autoantibody targeting treatments.
Click to expand...
It looks like this project and the first both test the validity of a post-hoc identification of subgroups in an earlier project?
 
You must log in or register to reply here.
Back
Top Bottom