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
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).
Ah well, research is the only thing that unbinds this. But, yeah, it's another ministry and they don't seem interested. Damnit.
ME/CFS Research Foundation: The ME/CFS Research Register is live! It offers comprehensive information on #MECFS research - initially in and , more countries will be added in the future. Projects, researchers, publications - all on one platform. read our full announcement: https://mecfs-research.org/en/mrr/
First model ward (clinic) for severely affected children and adolescents in Munich is co-funded by the ME/CFS Research Foundation https://mecfs-research.org/en/researchfunding-munich/
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.
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. ___________________
