Starting today, the ME/CFS Research Foundation provides a systematic overview of research on ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) to the public.
One of the foundation's goals is to make the ME/CFS research landscape more transparent and to support the networking of researchers. To this end, the ME/CFS Research Register now provides an overview of the most important research - from current projects to publications and working groups to scientific events such as conferences.
With this unique information service, the ME/CFS Research Foundation addresses the interest groups of researchers, physicians, politicians, the media, as well as patients and their relatives. The register's beta version, available from today, includes the current status of ME/CFS research in Germany and Austria (in English language). ME/CFS research projects, researchers, publications, etc. from other countries will be added in the future.
What information does the ME/CFS Research Register provide?
The register currently includes and links the following elements of ME/CFS research:
- Research Projects ,
- Working groups ,
- Publications ,
- Events (e.g. scientific conferences),
- People (e.g. researchers),
- Research areas ,
- Research types ,
- Research networks ,
- Organisations (e.g. universities).
The register lists more than 60 ME/CFS research projects in Germany and Austria that have been implemented since around 2019, including currently ongoing initiatives. These are projects that deal with targeted research on ME/CFS, i.e. projects in which internationally recognized ME/CFS diagnostic criteria were used to select patients. Research projects on the long-term sequelae of COVID-19 (Long-COVID or Post-COVID syndrome) in which ME/CFS diagnostic criteria are applied are also listed in the register. To date, around 40 scientific working groups (also called laboratories or “labs”) are involved in the implementation of these projects.
In addition to over 90 scientific articles that have been published by researchers in Germany and Austria on the disease since 2010, the register also provides a selection of scientific events, including the ME/CFS Conference 2023. The register is further supplemented with overviews of the people involved in ME/CFS research (researchers and physicians) and organisations (e.g. universities and clinics), as well as the research networks (e.g. National Clinical Studies Group). The register also reflects the various research areas (e.g. dysfunctions of the immune or nervous system) and types of research (e.g. clinical or basic research) that have so far been applied to ME/CFS.
The data contained in the register, which is updated on an ongoing basis, comes mainly from publicly available sources. In addition, we take into account information provided to us by people directly involved in ME/CFS research.
How can you use the ME/CFS Research Register?
All elements of the ME/CFS Research Register are mutually interlinked. This means that, for the first time, users can gain a comprehensive insight into the ME/CFS research landscape, simply by "clicking through" the website. The many aspects and stakeholders in ME/CFS research are made accessible to users in a new, simple way, regardless of the perspective from which they enter the register.
Clicking on a research project for example, provides detailed information such as status, duration, sponsors, and a description of the project as well as details on the patient cohort, and all other content linked to the project. The register also includes the research areas examined in the project, what type of research it is, as well as a selection of the people and the working groups involved. In turn, by clicking on one of the working groups, users are provided with a list of all other projects by this particular group, and more. Clicking on a publication displays all the authors, including those with profiles listed in the register. Depending on the users' information needs, the register thereby makes all content-related connections and stakeholders involved transparent.
Links to external content along the different elements (e.g. websites of the projects and working groups or or linked articles in scientific journals) open up opportunities for more in-depth research.
What are the benefits of the ME/CFS Research Register?
For the first time, the ME/CFS Research Register consolidates and connects all relevant information on ME/CFS research on one comprehensive website. The aim is to create more transparency on historical and currently ongoing ME/CFS research. All information is currently available publicly, free of charge, and is intended to make it easier for the above-mentioned interest groups to gain access to the field of ME/CFS research. Those directly involved in research or interested experts from other fields can use the register to easily delve into ME/CFS research. This is intended to further advance the field and enable the networking of researchers.
By systematically processing and linking the various contents, it is also possible to derive better insights into the current status and historical progress of ME/CFS research (e.g. how many projects on basic research or treatment trials are currently being implemented in a particular country). Based on the information included in the register, the ME/CFS Research Foundation will publish summaries of the status of ME/CFS research in the included countries. The data listed in the register will also play a role in the selection of future projects to be funded by the foundation. Among other things, the register provides indications of the areas in which there is a particular need for research. Funding decisions by the foundation will also be based on the extent to which applying projects are meaningfully linked to existing research and thus build on previous results or, for example, use shared resources.
Where does ME/CFS research stand today?
Globally, ME/CFS is a field of research that significantly lacks behind in comparison to other diseases, internationally. This applies to both the scope of available funding and the number of researchers and working groups that are actively involved so far. Due to the growing importance of research into post-infectious diseases in the wake of the COVID-19 pandemic, ME/CFS research is receiving growing attention and, since the end of 2021, increased support in the form of public funding. In Germany, €15 million for research into the disease mechanisms of ME/CFS were recently made available via a funding call by the Federal Ministry of Education and Research (BMBF). As the ME/CFS Research Foundation, we see this as a positive development, which is going to result in new projects and collaborations in 2024 and beyond. Other important milestones include a total of €18 million in funding for the “National Clinical Studies Group” from 2022-2026 as well as €2,1 million in funding for the “Immune Mechanism of ME” research network from 2022-2025.
At the same time, given the still comparatively small amount of public funding made available, private foundations play a central role in the implementation of research projects (this was discussed at thefoundation’s presentation at the ME/CFS Symposium 2023 at the Charité). As the ME/CFS research field is increasingly gaining traction, the ME/CFS Research Register aims to provide more visibility of previous and ongoing research work and to stimulate more networking between researchers and initiatives, thereby enabling new targeted projects and eventually progress in patient care and treatment.
How do we move forward?
The ME/CFS Research Foundation is looking forward to many active users of the new ME/CFS Research Register and to receiving their feedback during the current beta phase. We plan to continually update and expand the contents of the register - and to cover more international ME/CFS research in the future. We will continue to provide information about updates and changes to the register via our online communication channels.
Please note: Despite careful research, the ME/CFS Research Foundation cannot guarantee the completeness or accuracy of the information listed in the ME/CFS Research Register. We therefore ask the research community for their constructive feedback on the register. Requests for changes and additions to listed data can simply be addressed to us via the feedback form of the register .
How can you support the work of the ME/CFS Research Foundation?
There is still a long way to go before diagnosis, care and treatment of ME/CFS patients will one day become a medical and social standard. We at the ME/CFS Research Foundation are focussing on biomedical research, which we see as the key element in solving these problems (more on this in our research finding strategy). To do this, we need extensive support from private donors - patients, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you can't support us directly, maybe you can share our story and motivate others to help. Because only together is such a feat possible.
We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. better ME/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!
We appreciate all kinds of Support!
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