Top 10 Highlights from ZonMw ME/CFS Research Webinar and Data Meeting

Webinar 16 April 2024

On April 16, ZonMw organized a webinar about the ME/CFS research program. We look back on a successful meeting, where more than 370 people were present digitally. The webinar can now be viewed again through our website. The webinar with English subtitles will be available on the website later.

Many questions were asked by viewers during the webinar; some of this was answered during the conference. An overview of common questions was made with answers to the questions that were not discussed during the conference. This overview can be read again on the website.

Interviews about living with ME/CFS

During the ME/CFS webinar on April 16, stories from experienced experts played an important role. The webinar opened with a montage of 4 interviews from experienced experts who talk about what it’s like to live with ME/CFS. These interviews – as 4 separate stories – available on our website. The videos will be used throughout the research program to, for example, inform researchers and healthcare professionals about what it’s like to live with ME/CFS.

‘ME/CFS research in pictures’ blog series

To address the researchers from the ME/CFS researchers programme, there is the ‘ME/CFS research in pictures’ blog series. Here, researchers from the program discuss what their research entails and what should be achieved. A second blog in the blog series on ME/CFS research has been published on our website. Telling in the blog The makers of Ruud Raij about his research on ME/CFS and other post-infectious conditions. The full series can finally be found here collection sheet.

FAIR data meeting

The proper use and reuse of large data sets can contribute to advances in research on diseases for which there is currently no effective treatment, such as ME/CFS and Post-COVID. That is why on Tuesday April 9, nearly 50 researchers and data experts within the ME/CFS and Post-COVID consortium of ZonMw met in Zwolle. The goal: to create a broad community to exchange knowledge and experience to make the data FAIR from the beginning of the research. FAIR stands for Discovery, Accessibility, Interoperability (without limitation) and Reusability.

The participants were given work under the chairmanship of Sjaak de Gouw. The day was a part where the importance and urgency of discoverable and reusable data was explained by ZonMw staff. Passionate presentations about the international importance of FAIR data and biobanks followed. The data experts from the coalitions that were present showed what is already happening in this area that we can get involved in. During interactive workshops, researchers and data experts worked to make agreements to make data more accessible and comparable, so that you can gain more knowledge from the same data collections. And that’s fair to all the patients who are waiting for research results, which will hopefully provide the key to better diagnosis and treatment.