{"id":10939,"date":"2024-12-27T13:27:00","date_gmt":"2024-12-27T13:27:00","guid":{"rendered":"https:\/\/mecfs-research.org\/?p=10939"},"modified":"2025-11-08T16:56:13","modified_gmt":"2025-11-08T16:56:13","slug":"mrr-update-dec24","status":"publish","type":"post","link":"https:\/\/mecfs-research.org\/en\/mrr-update-dec24\/","title":{"rendered":"Update for the ME\/CFS Research Register: Netherlands, Switzerland and new functionalities"},"content":{"rendered":"

The ME\/CFS Research Register now includes an overview of the ME\/CFS research landscape in the Netherlands and Switzerland. In addition to Germany and Austria, the register has been expanded to include additional research projects, research networks and scientific publications from two more countries in Europe. The register also provides new features, including detailed search filters and new and improved overviews of research types and areas.<\/strong><\/p>\n\n\n\n

The aim of the Register is to provide a systematic overview of the international ME\/CFS research landscape, thereby making this emerging field more transparent to different stakeholders. To this end, the register includes research projects and networks, working groups (research groups or so-called \u201claboratories\u201d), people, as well as scientific publications and events related to ME\/CFS research. With the launch of the beta version of the register<\/span><\/a> in February 2024, an all-encompassing view on past and ongoing ME\/CFS research in Germany and Austria has been provided for the first time. A detailed reporting on this can be found in our corresponding ME\/CFS Research Update: Germany & Austria.<\/span><\/a> .<\/p>\n\n\n\n

The ME\/CFS Research Foundation is continuously working on expanding the register. In addition to functional innovations, further countries and the ME\/CFS research conducted there will be added to the registry over time. <\/p>\n\n\n\n

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New functionalities of the ME\/CFS Research Register<\/h4>\n\n\n\n

New menu: <\/strong>Navigating through the register is now easier thanks to a more detailed menu. By clicking the new \u201cMenu\u201d button, all separate elements of the register can now be accessed directly (from research projects to organisations).<\/p>\n\n\n\n

Gobal search<\/strong>: \u00dcber die neue Volltextsuche werden alle Elemente des Registers nach Stichworten oder Namen durchsucht. Die Ergebnisse werden getrennt nach Projekten, Publikationen,       Arbeitsgruppen, Organisationen, usw. angezeigt. Diese Suchfunktion ist \u00fcber das neue Lupen Symbol in der Menuleiste einfach zu verwenden. List filters<\/strong> A new filter function has been implemented for the list views ofresearch projects<\/span><\/a>,publications<\/span><\/a>,working groups<\/span><\/a>, andpeople<\/span><\/a>. By clicking on \u201cSet filter\u201d these lists can be filtered for various elements, limiting the selection of displayed results based on the user\u2019s interests (e.g. to display only research projects that deal with the research area of autoimmunity). The filters can be changed or cleared according to the user\u2019s preferences. Next to the new filter button is a free text search that enables the user to quickly search lists for certain elements (e.g. the title of a research project, names of people, or research areas) without having to apply the detailed filter.<\/p>\n\n\n\n

New display options: <\/strong>In addition to the existing \u2018list\u2019 display,research areas<\/span><\/a>can now be displayed hierarchically or in the form of a graphical diagram at different levels.Research types<\/span><\/a>can also be displayed as a \u2018list\u2019 or in the form of a graphical diagram by level. <\/p>\n\n\n\n

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New content in the ME\/CFS Research Register<\/h4>\n\n\n\n

ME\/CFS research in the Netherlands and Switzerland has been added to the register, in the form of research projects and publications, as well as the people, working groups, research networks and the organisations conducting the research. While a cohort study<\/span><\/a> was recently completed in Switzerland, with a clinical trial<\/span><\/a> currently still being implemented, a total of twelve research projects are being carried out in the Netherlands at this time. The total of 14 projects that have been recently implemented or are currently underway in both countries include basic, epidemiological as well as clinical research.
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The thematic focus, i.e. the research areas that research projects in the Netherlands are concerned with, range from dysfunction of the immune, nervous, vascular, blood and lymphatic systems to disorders of the digestive and metabolic systems, as well as the musculoskeletal system. The role of infections and genetic risk factors in addition to the general research area of biobanks are also the subject of ongoing research in the Netherlands. In contrast, research projects in Switzerland have so far only dealt with patient care and mental health in ME\/CFS.

The register currently lists seven dedicated working groups that are involved in ME\/CFS research in the Netherlands. These working groups are based at the universities or university clinics in Amsterdam, Groningen, Rotterdam, and Utrecht. In Switzerland, one working group in Basel is currently active in the field of ME\/CFS research. 

Ten of the twelve ME\/CFS research projects in the Netherlands are assigned to two research networks (NMCB<\/a>and ME\/CFS Lines<\/a>). Both research networks began their work in the beginning of 2023 with funding from the Ministry of Health, Welfare and Sport (VWS), within the framework of the Netherlands Organisation for Health Research and Development (ZonMw). At this moment, there are no ME\/CFS research networks in Switzerland.

The ME\/CFS Research Register currently lists 63 scientific publications that were (co-)authored by researchers or medical professionals in the Netherlands. Of these, 50 publications are classified as clinical research, while the remaining articles are divided into basic research, epidemiological or secondary research. As of today, the register also lists a total of five publications that were (co-)written by authors in Switzerland, classified as either epidemiological research or secondary research. Publications listed in the register include those which have been made available since the year 2010 and which reflect the current state of ME\/CFS research. The research projects included in the register also deal exclusively with the current state of evidence on the pathogenesis of the disease, which is in contrast to historical and deviating classifications of ME\/CFS (e.g. as a psychosomatic disease).<\/p>\n\n\n\n

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Summary and outlook<\/h4>\n\n\n\n

ME\/CFS research projects in the Netherlands and Switzerland cover all types of medical research. The number of basic and epidemiological research projects is roughly evenly distributed (six and five research projects respectively). Among the research projects currently underway, clinical research is still relatively rare (three research projects in total). In comparison to ME\/CFS research in Germany<\/span><\/a> , for example, no clinical trials with the aim to develop pharmaceutical treatments are currently being conducted in the Netherlands or in Switzerland. The vast majority of publications made available to date, particularly by authors in the Netherlands, is however classified as clinical research (50 out of a total of 68 publications), which includes a small number of studies on potential treatments.

In both countries, few working groups and research networks are currently active in ME\/CFS research. For the Netherlands, however, it should be mentioned that, in addition to the so far funded research networks and their sub-projects (NMCB and ME\/CFS Lines), another ZonMw call for funding ME\/CFS research<\/span><\/a> is currently ongoing. The announcement of which additional research projects will be funded by ZonMw under this call is expected for July 2025. This research (NMCB, ME\/CFS Lines and the newly to be funded research projects in 2025) is part of ZonMw\u2019s ten-year ME\/CFS research programme<\/span><\/a> (external link), which is supported with a total of 28,5 million euros for the period of 2021-2031. The state-funded ME\/CFS research programme originally goes back to a petition by patient organisations in the Netherlands and their demands for more biomedical research.

Due to the thematic overlap, it is also worth mentioning that 21 new research projects in the Netherlands are due to start their work this year as part of ZonMw\u2019s post-COVID syndrome research programme<\/span><\/a> (external link). Several projects have already been initiated within this programme. The post-COVID syndrome programme is funded by VWS with a total of around 32 mln euros for the period of 2023-2026.

With the international ME\/CFS research landscape developing dynamically, the ME\/CFS Research Register will now continuously reflect the latest additions and updates for research in the Netherlands and Switzerland, in addition to Germany and Austria. As a foundation, we hope that this will help to increase the visibility and transparency of ME\/CFS research. Our editorial team is working on adding more countries to the registry in the near future. The technical features for using the registry are also continuously being improved and expanded. We will provide information about all new updates on our channels (see links below).

The ME\/CFS Research Foundation thanks the patient organisations ME\/cvs Vereniging<\/span><\/a> (external link) and Long Covid Schweiz<\/span><\/a> (external link) for their support in the review process.<\/p>\n\n\n\n

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How can you support the work of the ME\/CFS Research Foundation?<\/h4>\n\n\n\n

We are committed to ensuring that the diagnosis, care and treatment of ME\/CFS sufferers will one day become the medical and social norm. As the ME\/CFS Research Foundation, we focus on biomedical research, which we see as the key to solving these problems (more on this in our research funding strategy<\/a><\/span> and in our half year report summer 2025<\/a><\/span>, which summarises our activities). To do this, we need extensive support from private donors \u2013 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.<\/p>\n\n\n\n

We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. improved ME\/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!<\/p>\n\n\n\n

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We appreciate all kinds of support:<\/strong><\/p>\n\n\n\n

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Donate to ME\/CFS research<\/strong><\/a><\/div>\n<\/div>\n<\/div>\n\n\n\n
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Please subscribe to our newsletter:<\/strong><\/p>\n\n\n\n

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