This update summarizes the current status of ME/CFS research in Germany and Austria based on data from the ME/CFS Research Register . The ME/CFS Research Update was published gradually since March 2024 to give patients, relatives, doctors, scientists and the general public a better insight into the research landscape.
The ME/CFS Research Register lists all research projects in the two countries since 2019 for the first time. The register was published in February 2024 and is continuously updated. Additional countries will be covered soon. The data and analyses shown here refer to the status of the register as of July 2024 or the date indicated in the graphics.
Last update from 12 September 2024: Summary of the previously published parts 1-7 and addition of a conclusion and outlook on the expected development of ME/CFS research.
If you would like to read this ME/CFS Research Update as a PDF or print it out (e.g. to pass it on offline), you can download it here:
Chapter overview:
- Initial situation and current development
- Part 1: ME/CFS research is slowly picking up speed
- Part 2: How are the ME/CFS projects distributed across different types of research?
- Part 3: Which medical research areas are covered by ME/CFS projects?
- Part 4: When can results from the therapy and phase II studies be expected?
- Part 5: How many working groups are conducting research on ME/CFS?
- Part 6: How are the ME/CFS research working groups networked with each other?
- Part 7: How many scientific publications on ME/CFS have come out of Germany and Austria?
- Part 8: Summary and outlook
- Summary: Where does ME/CFS research stand today?
- Outlook: How will ME/CFS research develop in the near future?
Initial situation and current development
Research into the severe multisystem disease ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has been neglected for decades. The disease was first classified by the WHO in 1969. Until recently, however, there were hardly any research projects and only a few researchers and working groups due to a global lack of public funding. Compared to other, less common diseases, such as multiple sclerosis or HIV/AIDS, ME/CFS research is therefore four decades behind, as shown in a comparison of scientific publications by the German Association for ME/CFS (Deutsche Gesellschaft für ME/CFS) (external link). To date, only comparatively small amounts of funding are available for research into ME/CFS - not only in Germany, but worldwide.
However, ME/CFS research in Germany and Austria has slowly been gaining momentum since 2021/22. Over the course of the COVID-19 pandemic, the challenge of post-infectious diseases, especially the not uncommon Long COVID or post-COVID syndrome, has become much more apparent than before. Until the pandemic, ME/CFS research was exclusively funded by private donations. Since 2021/22, public funding has been made available for the first time for research into ME/CFS, which is often described as the most severe form of post-COVID syndrome. The resulting increase in research intensity is reflected in an increasing number of research projects (see part 1) and scientific publications (see part 7), typically following with a time delay from projects.
With the help of public funding, both new stand-alone projects as well as joint research projects have been set up, such as the ME/CFS Registry and Biobank and the joint projects NKSG and IMMME (Immune Mechanism of ME) (see part 6). The newly created research projects and joint projects, which include clinical trials on therapy development (see part 4), with the participation of various working groups (see part 5), form essential foundations for the further expansion of ME/CFS research. This is urgently needed in view of the high and still increasing number of people affected (well over 500,000 people in Germany, including over 80,000 children (for more detail see “What is ME/CFS?” on our website). The first 7 parts of the ME/CFS research update highlight the current state of research, which has emerged primarily in recent years, from various perspectives (research projects, research types, research areas, clinical trials, working groups, research networks, publications). Further details on these perspectives can be accessed via website links to the ME/CFS Research Register. At the end of this update, in part 8, we provide a brief outlook on the foreseeable development of ME/CFS research in Germany and Austria.
Part 1: ME/CFS research is slowly picking up speed (published 01.03.2024)
The data from the ME/CFS Research Register show the significant increase in research intensity since 2022. The public funding for ME/CFS research (at federal and partly at state level) available for the first time since then has made a number of previously unrealisable projects possible.
Most of the 42 ongoing research projects were started in 2022 and 2023. These include, for example, the 11 projects of the NKSG - National Clinical Study Group in the field of clinical research and the five projects of the IMMME – Immune Mechanism of ME basic research (funded by the BMBF, Federal Ministry of Education and Research in Germany). Four further projects were made possible by other public organisations. Additional research is funded by private foundations and patient organisations.
Public funding that has already been announced will enable further new research projects and the continuation of ongoing initiatives, e.g. the NKSG, from around mid-2024. This will create a positive, but also long overdue dynamic in ME/CFS research in Germany. ME/CFS is a medical research field that is characterised by a considerable global backlog (external link) compared to other diseases. This applies to both the amount of available funding and the number of researchers and working groups actively involved to date. Due to the growing importance of post-infectious diseases in the wake of the COVID-19 pandemic, ME/CFS research is also receiving increased attention and, since the end of 2021, more public funding.
The ME/CFS Research Foundation will make this development transparent with the publicly accessible ME/CFS Research Register and will also regularly publish up-to-date data on ME/CFS research. In addition to financial project funding, this is an important contribution to supporting ME/CFS research.
Part 2: How are the ME/CFS projects distributed across different types of research? (published 28.03.2024)
A total of 61 research projects have been or are still being conducted in Germany and Austria since 2019. These are distributed fairly evenly across the three research types:
- Basic research (24 projects)
- Epidemiological research (19 projects)
- Clinical research (18 projects)
It should be noted that clinical research projects generally require much higher financial budgets than basic or epidemiological research. Looking at the research types in terms of the costs incurred, projects in the field of clinical research account for the majority of financial expenditure.
Of the 18 clinical research projects, nine projects are in the Bereichen Diagnostik und Prognostik Three of these projects have already been completed. A further nine projects are concerned with research into possible therapies for ME/CFS in the form of therapy or phase II studies. These include studies on Methylprednisolone, BC007, hyperbaric oxygen therapy (HBOT), Vericiguat and several studies on Immunoadsorption. All clinical studies on therapy development are currently still being conducted.
In the ME/CFS Research Register , all 61 projects are described in detail and linked to the involved working groups, researchers and additional information. All projects are assigned to research types , which are also explained in the register. For example, the following subtypes of clinical studies:
- Diagnostics studies aim to evaluate the accuracy of a diagnostic test or method in identifying a disease. In this way, new biomarkers can be analysed for their diagnostic suitability.
- Prognostics studies , on the other hand, examine diagnostic methods in terms of their ability to predict improvement or worsening of a disease over time or following therapy. These studies can be used to determine which biomarkers and diagnostic methods may be able to predict whether a therapy is likely to be successful.
- Observational therapy studies are used to generate initial findings on the effect of treatment interventions. Therapy studies are adapted to the individual needs of the patients and do not follow a strict study protocol.
- Interventional clinical studies, e.g. so-called phase II studies, follow a strict protocol and also include patients who are treated with a placebo. Phase II studies also include a larger number of patients and evaluate the effectiveness of the treatment as well as possible side effects according to a protocol that is uniform for all patients.
Part 3: Which medical research areas are covered by ME/CFS projects? (veröffentlicht 09.04.2024)
In addition to the distribution of projects across research types, i.e. basic, epidemiological and clinical research (see part 2 above), all projects in the ME/CFS Research Register are also differentiated according to medical research areas . Research areas include organs, body systems and health factors studied in connection with the occurrence of ME/CFS. This enables the targeted search for research projects according to thematic focus (e.g. "autoimmunity” oder “nervous system disorder" in the ME/CFS Research Register. Please note that most projects are assigned to more than one research area. Hence the total number of research projects in the illustration below exceeds the 61 research projects in Germany and Austria listed in the register so far.
Thegeneral" is the most frequently represented with 25 projects. The term "general" is used when research project is not limited to specific body or organ systems. This includes projects that deal with "patient care,biobanking,general risk factorsor studies dealing withproteomicsortranscriptomics) befassen. Vor allem Projekte aus der epidemiologischen Forschung sind “general" (17 projects), alongside projects dealing with clinical research (3) and basic research (5). As described above, individual projects can also be assigned to other research areas at the same time.
Neben Allgemein (“general”) gehören die Forschungsbereiche immunologische Dysfunktion (immunological dysfunctionimmunological dysfunction (17 projects, 11 of which are in the field of basic and 6 in the field of clinical research) andcardiovascular dysfunction(14 projects) are among the most frequently investigated areas of ME/CFS research in Germany and Austria to date.
Research projects to date have also focused on the role ofinfections, the influence of adisturbed nutritional and metabolic systemas well as the role ofnervous system disorder. Fewer projects to date have focussed on disorders of theblood and lymphatic system,mental health, adisturbed musculoskeletal systemorgenetic risk factorsin ME/CFS.
In total, the ME/CFS Research Register lists 82 medical research areas. The terminology used to describe research areas is largely based on the MeSH (Medical Subject Headings) terminology of the National Institutes of Health (NIH) as well as on selected literature. The register contains a short description for each of the used terms, incl. a reference to their respective source online. We will publish a comprehensive and systematic overview of the research areas used in the ME/CFS Research Register and their interconnections at a later date.
Part 4: When can results from the therapy and phase II studies be expected? (published 16.04.2024)
Research on possible treatment approaches targeting the underlying disease mechanisms of ME/CFS is crucial for improving long-term patient care. To date, limited data is available in the form of research on clinical trials for the treatment of ME/CFS. However, in the wake of Long COVID and post-COVID syndrome, more public funding has been made available since 2022 in order to expand the knowledge about possible treatment approaches for ME/CFS.
As explained in part 2 above, nine clinical trials are currently being implemented in Germany, probing biomedical treatment approaches for ME/CFS. Five of them are so-called therapy studies. Another four studies are so-called phase II studies, three of which are being carried out as part of the National Clinical Study Group (NKSG) and one as part of the COVID-19 Research Network Lower Saxony (COFONI) research network. Results of these studies are expected by the end of 2024 and predominantly during 2025 (see figure).
Towards the end of 2024, results are expected from the phase II study on Vericiguat (1: VERI-LONG). At the beginning of 2025, results will come through of the therapy studies on repeat Immunoadsorption (2: RIAand on direct current transcranial stimulation (3: ACTIVATE), as well as of the phase II studies on Immunoadsorption (4: IA-PACS-CFS) and on Methylprednisolone (5: PoCoVIT). The results of another phase II study on Immunoadsorption (6: EXTINCT post COVID) are due in mid-2025. The results of the therapy studies on hyperbaric oxygen therapy (7: HBOTand on immunoadsorption in young patients (8: BIAKI) will follow at the end of 2025. No information is available yet on the planned completion date for the therapy study on BC007 (9: unCOVer). Note: planned completion dates serve as an overall orientation. Actual completion dates may differ from these dates for various reasons.
In summary, by the end of 2025, first data on the effectiveness of five potential therapies for ME/CFS will likely be available, including results from three phase II studies (randomized, placebo-controlled). In order to assess how the interventions and drugs tested may potentially benefit ME/CFS patients in the long-term, further controlled clinical trials with larger numbers of test subjects will be required (phase II and III studies). Additional findings can also be expected stemming from the clinical trials carried out under the NKSG , as a result of the data obtained from the research network’s comprehensive diagnostics and biomarker studies in connection with these trials.
Part 5: How many working groups are conducting research on ME/CFS? (veröffentlicht 25.04.2024)
A total of 39working groupsare involved in the ME/CFS research projects, 35 of them in Germany and 4 in Austria. These working groups are spread across a total of 20 different organizations, including universities, university hospitals and research centers. Working groups in medical and scientific research (also referred to as laboratories or “labs”) are groups of people conducting research on specific topics under the direction of experts in their field and that are hosted by at least one organization (e.g. university hospital).
In Germany, 18 of the 35 working groups conducting research on ME/CFS are based at Charité - Universitätsmedizin Berlin and affiliated research institutions. These include the Berlin Institute of Health (BIH) and the Max Delbrück Center (MDC). Other working groups are based at the German Center for Neurodegenerative Diseases (DZNE), the Berlin School of Mind and Brain, Helmholtz Munich and the Max Planck Institute in Erlangen. Remaining groups are based at the university hospitals in Aachen, Erlangen, Freiburg, Lübeck and Munich as well as at the universities in Heidelberg, Munich, Regensburg and Würzburg.
Of a total of four working groups involved in ME/CFS research are found in Austria, out of which two are based at the Medical University of Vienna and one each at the Medical University and the FH Joanneum in Graz.
Allworking groupsconducting research on ME/CFS are listed with descriptions and links to their individual research projects in the ME/CFS Research Register .
Teil 6: How are the ME/CFS research working groups networked with each other? (published 22.05.2024)
So calledresearch networksplay a crucial role in ME/CFS research in addition to the working groups described above. These research networks are alliances or consortia of several research groups that have been established to conduct cooperative research specifically on ME/CFS (as a complete or partial focus) on the basis of joint funding. So far, three German research networks have been established:
The National Clinical Study Group (NKSG) and the research network Immune Mechanisms of ME (IMMME) were both founded in 2022 and are funded by the Federal Ministry of Education and Research (BMBF). They focus on clinical research (NKSG) and basic research (IMMME) on ME/CFS with a total of 16 ongoing research projects. Funded by the Lower Saxony Ministry of Science and Culture, the COVID-19 Research Network Lower Saxony (COFONI) is currently conducting a clinical trial on ME/CFS (link), but also researches non-ME/CFS-related aspects.
No comparable research networks have yet been established in Austria.
Further research networks could be established in Germany in the near future. This is because the additional BMBF funding of €15 million over 3 years announced in September 2023 (externer Link), several new ME/CFS research projects will emerge, which are to be organized in interdisciplinary networks in accordance with the BMBF funding guidelines. As soon as information on these projects and research networks is available, they will be included in the ME/CFS Research Register. We will report on this in due course.
Part 7: How many scientific publications on ME/CFS have come out of Germany and Austria? (published: 05.06.2024)
The ME/CFS Research Register currently displays 101 publications that have been made available between 2010 and May of 2024 (by researchers and clinicians based in Germany and Austria). There is a clearly visible upward trend in the number of articles and medical guidelines published on ME/CFS.
The number of publications on ME/CFS has increased significantly since 2020, in parallel with the increasing awareness of the disease and the growing medical need arising from post-acute infection syndromes. This trend will continue in 2024 and beyond, given the increasing number of research projects and researchers involved.
Many published articles describe the results of previously conducted research projects and clinical observations. In addition, there are a number of publications that are categorized as secondary research (e.g. articles outlining a hypothesis or summarizing the current state of scientific evidence). These contributions provide valuable insights and important additions to the publication of results from basic, epidemiological or clinical research projects.
Looking at the total of 101 publications by research types (see part 2 for explanation), 15 of these are within basic research. 15 publications belong to clinical research, 36 to epidemiological research and one to both (clinical and epidemiological). 34 publications are the results of secondary research, including medical guidelines, narrative and systematic reviews as well as hypothesis and opinion papers.
All publications in the ME/CFS Research Register are linked to their most important authors, research projects at the core of published results as well as further information. The list of publications in the MRR is updated regularly.
Part 8: Summary and outlook (published 12.09.2024)
Summary: Where does ME/CFS research stand today?
ME/CFS research in Germany and Austria addresses all types of medical research, including basic research, epidemiological research and clinical research. The number of projects is distributed almost equally among these three types (see part 2). Of all research types, clinical research has so far received the largest share of funding. Clinical trials in particular are regularly a lot more costly than projects in basic or epidemiological research.
Researchers and clinicians in both countries have also produced a number of scientific publications that are classified as secondary research. In parallel to the development of research projects, the number of publications on ME/CFS has recently increased and currently includes more than 100 articles and medical guidelines published since 2010 by authors in Germany and Austria (see part 7 as well as the publications listed in the. ME/CFS Research Register).
Clinical research is currently only carried out in Germany, including diagnostic and prognostic studies as well as observational therapy studies and interventional clinical studies in the form of phase II studies. The latter two types of clinical studies (therapy and phase II studies) are particularly relevant for the development of potential treatments for the underlying disease mechanisms. These clinical research projects have so far focused on so-called "repurposing". They test drugs or therapeutic approaches that are already approved for other diseases with regard to their effectiveness in ME/CFS. The results of the nine clinical trials that are currently underway to test treatment approaches are expected from the end of 2024 to the end of 2025 (see part 4).
The research areas, i.e. the thematic fields that ME/CFS research projects in Germany and Austria are centred on so far, cover different aspects of the development of the disease and its mechanisms. In particular, the role of the immune system, dysfunction of the cardiovascular system, the influence of infections, as well as disorders of the metabolic system and the nervous system are the focus of investigations in basic and clinical research projects. In the area of epidemiological research, patient care is a central research subject (see part 3).
The research landscape, that is the groups of scientists and physicians involved as well as their institutions and organisations (such as university hospitals and research centers), still only consists of a few actors. As of June 2024, a total of 39 working groups are active in ME/CFS research in Germany and Austria (see part 5). The central location of ME/CFS research is Charité – University Medicine Berlin, where a total of 18 working groups are involved in ME/CFS research projects. Additional working groups are located in Erlangen, Munich, Bonn and Lübeck, among others. In Austria, ME/CFS research has so far mainly been carried out by two working groups each in Vienna and Graz.
In Germany, two separately funded research networks are particularly relevant for ME/CFS research: the NKSG for the area of clinical research and IMMME for the area of basic research. In both networks, individual working groups from across Germany are conducting joint research. A sub-project within the COFONI research network in Lower Saxony is also dealing with ME/CFS (see part 6).
Outlook: How will ME/CFS research develop in the near future?
At the end of 2023, the German government announced further public funding for ME/CFS and post-COVID syndrome research. Award procedures are currently underway to decide which of the applicants will receive funding. The announcements of additional ME/CFS research networks and projects to be funded over the next few years is expected throughout this year. The calls for funding include:
- A €15 million call for funding of interdisciplinary research networks to investigate the pathomechanisms of ME/CFS in Germany by BMBF (German Federal Ministry of Education and Research) (for more details see our summary and commentary). As a result of this funding, an estimated 15-20 new projects as part of several research networks are set to begin their work by the end of the year.
- With the second funding phase of the NKSG starting in 2025, further clinical trials on therapy development will be launched in Germany soon. Detailed announcements are expected in the coming months.
- The German Federal Ministry of Health (BMG) is funding care research on post-COVID syndrome and ME/CFS in Germany with a total of around €150 mln (external link) until the end of 2028. Announcements of the care research projects to be funded (external link) are expected in the next few months.
- Individual federal states in Germany are also providing additional funding for ME/CFS research, e.g. in Thuringia (external link) and Bavaria.
- In Austria, a funding decision for the “Understanding ME/CFS Open Call 2024” (external Link) is due in October 2024, among others. The subject of the call for proposals are projects that deal with disease mechanisms, diagnostics and/or treatment of post-acute infectious diseases with the cardinal symptom PEM (post-exertional malaise) and thus mainly with ME/CFS.
Furthermore, new private foundations have become active in the ME/CFS research funding space in recent years, mainly the ME/CFS Research Foundation in Germany (see our half-year report Summer 2024) and the WE&ME Foundation (external link) in Austria. Their commitment and resources complement the mentioned public funding initiatives. The German Association for ME/CFS also established a research programme (external link) in 2023. Since 2018, the non-profit Weidenhammer Zöbele Foundation has been funding ME/CFS outpatient clinics and research at Charité – University Medicine Berlin and at the University Hospital of the Technical University of Munich (MRI TUM). The Lost Voices Foundation has been funding scholarships for young researchers (external link) since 2017.
The ME/CFS Research Foundation will provide detailed information on new research projects and networks, resulting from the mentioned funding initiatives and will include corresponding projects in the ME/CFS Research Register , as soon as more detailed information is available.
Over the last three years, ME/CFS research has made important progress. With the recent increase in public funding, combined with the financial commitment of private foundations, Germany in particular is now among the leading countries in ME/CFS research in international comparison. This "new beginning" is cause for optimism. However, it is also urgently needed in view of the high number of people affected and given that ME/CFS research still has a lot of catching up to do when compared to similarly severe but less common diseases.
Such a ‘new departure’ is cause for optimism. However, in view of the high number of people affected, it is also urgently needed and, in view of the fact that ME/CFS research still has a lot of catching up to do compared to similarly severe and less common diseases.
How can you support the work of the ME/CFS Research Foundation?
Like the ME/CFS Research Register, this compilation of research data is a free service provided by the ME/CFS Research Foundation for ME/CFS sufferers, relatives, researchers, medical professionals and the general public.
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 funding strategy and in our half year report summer 2024, which summarises our activities). To do this, we need extensive support from private donors – those affected, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you are not able to provide direct support, you can share our story and motivate others to help. Because only together can such a feat be achieved.
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