Germany: ME/CFS Research Foundation

TiredSam

TiredSam

Committee Member
From their newsletter, DeepL translation:

ME/CFS Research Foundation announces research funding strategy and appoints international scientific advisory board

Hamburg, August 18, 2023

Since 2022, we have been advocating for more biomedical research on ME/CFS. We and many other organizations, initiatives and people affected by ME/CFS are calling for more public research funding. For decades, much less research has been done on ME/CFS than on other diseases that are similarly common or even less common. The interest of the pharmaceutical industry is correspondingly low to invest money for clinical studies in a disease that has so far been insufficiently researched. As a result, there are still no causal therapeutic options for this chronic and often severe disease.

Today, we would like to make our overarching objective as a research-funding organization more concrete and thus more transparent. Because our work needs a lot of money and commitment, which we can only achieve with many donations and a high level of trust from those affected, donors, the scientific community and the public.

zur Förderstrategie der ME/CFS Research Foundation

We also recently announced the appointment of our internationally staffed Scientific Advisory Board. The Advisory Board strengthens the scientific profile of the organization and will advise and support the direction of future direct research funding. This includes decisions on the allocation of funding to individual project proposals.

The Advisory Board includes renowned researchers from the Netherlands, Norway, England, Poland, Portugal and Austria who have been researching and publishing on ME/CFS for many years and are internationally networked. The breadth of experience ranges from basic research to clinical research to biostatistics, and is thus aligned with the focus of the Foundation - the promotion of biomedical research on ME/CFS. Members of the Scientific Advisory Board include Jeroen den Dunnen, Øystein Fluge, Eliana Lacerda, Olav Mella, Nuno Sepúlveda, Karl Johan Tronstad, Francisco Westermeier and Pawel Zalewski.

mehr über den internationalen, wissenschaftlichen Beirat
 
TiredSam said:
From their newsletter, DeepL translation:

ME/CFS Research Foundation announces research funding strategy and appoints international scientific advisory board

Hamburg, August 18, 2023

Since 2022, we have been advocating for more biomedical research on ME/CFS. We and many other organizations, initiatives and people affected by ME/CFS are calling for more public research funding. For decades, much less research has been done on ME/CFS than on other diseases that are similarly common or even less common. The interest of the pharmaceutical industry is correspondingly low to invest money for clinical studies in a disease that has so far been insufficiently researched. As a result, there are still no causal therapeutic options for this chronic and often severe disease.

Today, we would like to make our overarching objective as a research-funding organization more concrete and thus more transparent. Because our work needs a lot of money and commitment, which we can only achieve with many donations and a high level of trust from those affected, donors, the scientific community and the public.

zur Förderstrategie der ME/CFS Research Foundation

We also recently announced the appointment of our internationally staffed Scientific Advisory Board. The Advisory Board strengthens the scientific profile of the organization and will advise and support the direction of future direct research funding. This includes decisions on the allocation of funding to individual project proposals.

The Advisory Board includes renowned researchers from the Netherlands, Norway, England, Poland, Portugal and Austria who have been researching and publishing on ME/CFS for many years and are internationally networked. The breadth of experience ranges from basic research to clinical research to biostatistics, and is thus aligned with the focus of the Foundation - the promotion of biomedical research on ME/CFS. Members of the Scientific Advisory Board include Jeroen den Dunnen, Øystein Fluge, Eliana Lacerda, Olav Mella, Nuno Sepúlveda, Karl Johan Tronstad, Francisco Westermeier and Pawel Zalewski.

mehr über den internationalen, wissenschaftlichen Beirat
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I held my breath until I got to the end of the names there... I think having read Netherlands, Norway and England being named first and waiting to check the 'you know who's' from there hadn't somehow snuck in
 
English language article on foundation’s website:
https://mecfs-research.org/en/fundingstrategy/

I haven’t been following what has been happening in Germany so interesting to read.

This was disappointing:
Please note: The Federal Minister of Health, Karl Lauterbach announced in July 40 million € for research funding under the Long-COVID-programme that are earmarked for health services research (this is not basic research or clinical studies). Health services research is a very important aspect for the design of health services and their subsequent recognition by health insurance funds. However, diagnostic research (e.g. biomarkers) and therapies are investigated within the framework of translational basic research and clinical trials. These types of research are not part of the BMG (Federal Ministry of Health) funding. The budgets for this are the responsibility of the BMBF (Federal Ministry of Education and Research).
 
Dolphin said:
English language article on foundation’s website:
https://mecfs-research.org/en/fundingstrategy/

I haven’t been following what has been happening in Germany so interesting to read.

This was disappointing:
Please note: The Federal Minister of Health, Karl Lauterbach announced in July 40 million € for research funding under the Long-COVID-programme that are earmarked for health services research (this is not basic research or clinical studies). Health services research is a very important aspect for the design of health services and their subsequent recognition by health insurance funds. However, diagnostic research (e.g. biomarkers) and therapies are investigated within the framework of translational basic research and clinical trials. These types of research are not part of the BMG (Federal Ministry of Health) funding. The budgets for this are the responsibility of the BMBF (Federal Ministry of Education and Research).
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Ah well, research is the only thing that unbinds this. But, yeah, it's another ministry and they don't seem interested. Damnit.
 
That link is to quite a long and detailed article - excerpt below. It sounds as though a great deal of innovative work is being done. And it could have a tremendous impact. I hope the projects are in good hands - it appears from this that they are.

The establishment of a model ward (clinic) in combination with outreach and telemedical treatment modules, digital expert boards and training courses is an extraordinarily innovative approach to providing comprehensive care for those affected and researching their illness in the context of care. In addition, diagnostic and therapeutic standards are being further developed and agreed in the project. The growing "Multicentric Long COVID Register" (MLCR) is creating an important network for joint, standardized and comprehensive research into the clinical pictures. Another sub-project is researching potential biomarkers for precision diagnostics, such as cell deformability or changes in the vessels at the back of the eye. Finally, the project also provides a cross-sectoral analysis of care structures for two Bavarian model regions and explicitly addresses the public health service (ÖGD).

The overall project is initially scheduled to run until the end of 2024. The aim is to use the results to establish important foundations for the future diagnosis and treatment of young patients with severe post-infection syndromes (PAIS) and ME/CFS as well as research into these clinical pictures throughout Germany and internationally.

Why do we fund this project?

The subprojects described above fulfill the requirements of the funding strategy of the ME/CFS Research Foundation . The project's focus and research objectives correspond to the priorities identified in the Guide to research and care for ME/CFS and Post-COVID-Syndrome (published by German Association for ME/CFS (Deutsche Gesellschaft für ME/CFS) and Long COVID Germany) for ME/CFS in the areas of care and basic and diagnostic research, which are supported by the ME/CFS Research Foundation.

Of central importance is the targeted consideration of severely and very severely ill patients, whose care and research is particularly complex and is therefore often neglected within the framework of existing care structures and research projects. In the funded project, biosamples from housebound patients will also be obtained for research for the first time and linked to the ME/CFS Register and Biobank project, which is funded by the Federal Ministry of Health and also coordinated by the MCFC.

Jörg Heydecke: „When Prof Uta Behrends first explained her idea of a post-COVID and ME/CFS model ward in a conversation at the end of 2022, I was immediately enthusiastic. I thought it could be a pilot project for ME/CFS care and research at the same time. Based on the processes and structures to be trialled, cost and care models can be developed that will later enable reliable planning of such services for other clinics. As a private foundation, we welcome the main funding from the Bavarian State Ministry of Health and Care and are also very pleased to be able to make an important contribution to the success of the project through our donations. We are very much looking forward to the results of this extremely innovative and urgently needed project."
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It’s good in my opinion they are not main funder:
As a private foundation, we welcome the main funding from the Bavarian State Ministry of Health and Care and are also very pleased to be able to make an important contribution to the success of the project through our donations.

Private research funding is limited and could be very quickly spent providing clinical care. Clinical care is of course important but if I’m donating to or fundraising for research, that is not what I expect my money to go on. However I suppose there may be occasions that it could be useful to facilitate research.
 
From an email:

ME/CFS Research Update: an overview of the current research in Germany and Austria
Hamburg, 10 April 2024

The new ME/CFS Research Update offers patients, relatives and interested parties an overview of the current research landscape based on data from the ME/CFS Research Register.

Since February, the ME/CFS Research Register (beta) has provided a systematic and up-to-date overview of the research landscape on ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). Many patients, relatives and interested parties also asked for a summarised presentation of current ME/CFS research that is easier to read. We are happy to fulfil this request with the ME/CFS Research Update. So far, three initial parts of the update have been published:

  • Part 1: ME/CFS research is slowly picking up speed (published 01.03.2024)
  • Part 2: How are ME/CFS projects distributed across different types of research? (published 28.03.2024)
  • Part 3: Which medical research areas are covered by ME/CFS projects? (published 09.04.2024)
view the ME/CFS Research Update
With hope to generate more interest in ME/CFS research with the update. It is also intended for those who may not (be able to) keep track of scientific publications. Short texts and explanatory graphics provide a summary of the ME/CFS Research Register's data. To pass this information on to other interested parties, or to doctors or other experts, we also provide the current status of the ME/CFS Research Update as a PDF download:

download PDF (ME/CFS Research Update)
We will be completing the update step by step over the next few weeks. Parts 4 to 7 with the following topics are already planned:

  • When can we expect results from the therapy and phase II trials?
  • How many working groups are there in ME/CFS research in Germany and Austria?
  • How are the ME/CFS research working groups networked with each other?
  • How much has been and is being published on ME/CFS in Germany and Austria?
We will use the ME/CFS Research Update to regularly update the overview of the research landscape, e.g. when additional countries and/or new research projects are added to the ME/CFS Research Register in the future.
___________________
 
from an email

International ME/CFS Conference 2025 – Register now for online participation!
Hamburg, 28 March 2025

Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open! The scientific conference will be centred on the care, research, and treatment of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and post-COVID syndrome. The two-day hybrid event is directed at medical professionals, researchers and interdisciplinary experts in the fields of medicine and biology.


The agenda, list of speakers and chairs, as well as registration for online participation(free of charge), are now available on the official event website. CME points have been applied for at the Ärztekammer Berlin (details will follow).

register now: International ME/CFS Conference 2025
Under the stewardship of Prof Carmen Scheibenbogen, Director of the Division of Immunodeficiencies and Post-infectious Diseases and the Charité Fatigue Center (CFC) at Charité - University Medicine Berlin, the conference will bring together leading international experts from the USA, Japan, Europe and Israel to present the latest research on ME/CFS. Participants will be discussing the needs and advancements in medical care, and delve into the developing understanding of disease mechanisms, from cardiovascular dysregulation and mitochondrial pathology to immune dysregulation and autoimmunity. A major focus at the conference in spring 2025 will be the presentation of latest findings and results from clinical trials, in an effort to illuminate global efforts to develop curative treatments. Speakers’ contributions will be centred on ME/CFS, but will also shine a light on post-COVID syndrome research.

All presentations will be held in English. Videos of presentations will be made available on our website after the conference.



Summaries and video recordings from the prior events International ME/CFS Conference 2023and the ME/CFS Symposium 2023 are available on our website.

The ME/CFS Research Foundation is organising and funding the International ME/CFS Conference 2025 and the subsequent ME/CFS Symposium 2025 - Research in Germany as part of our commitment to supporting the networking of leading researchers as well as informing patients and the general public about progress in ME/CFS research.
 
The rising cost of Long COVID and ME/CFS in Germany
For the first time, a new report released by Risklayer and the ME/CFS Research Foundation models the prevalence and cost of Long COVID and ME/CFS in Germany. The report looked at the entire five-year period between 2020 and 2024 and found that both diseases created a substantial societal burden. This website summarises key findings and conclusions from the report. The full report, which includes a detailed description of the model developed to generate the novel data, can be accessed via the download link below.
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Using an innovative approach, by combing existing data and findings from literature with novel data from a model specifically developed for this report, the authors show that, at the end of 2024, 871,086 people in Germany were likely living with Long COVID, while an additional 650,183 people were living with ME/CFS (the latter includes ME/CFS diagnosed as a result of COVID-19/Long COVID). See also Table 1 of the report. In total, more than 1.5 million people in Germany were living with either Long COVID or ME/CFS at the end of 2024.
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Link to summary webpage
Link to full report
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This post has been copied and discussion moved to a new thread:The rising cost of Long COVID and ME/CFS in Germany, 2025, ME Research Foundation
 
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