2024-04-24 01:53:40
On April 16, ZonMw organized a webinar about the ME/CFS research program. We look back on a successful meeting, attended digitally by more than 370 people. The webinar can now be viewed again through our website. The webinar with English subtitles will be made available on the website at a later date.
The audience asked many questions during the seminar; some of this was answered during the seminar. An overview of common questions has been made with answers to the questions that were not discussed during the seminar. 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 talking about what it’s like to live with ME/CFS. These interviews are – as 4 separate stories – available on our website. The videos will be used during the research programme, for example, to inform researchers and healthcare professionals about what it is like to live with ME/CFS.
Blog series ‘ME/CFS research in pictures’
To address the researchers of the ME/CFS researchers programme, there is the blog series ‘ME/CFS research in pictures’. Here, researchers from the program talk about what their research is about and what it should be called. The second blog in the series of blogs on ME/CFS research has been published on our website. Tells in the blog Ruud Raijmakers about his research on ME/CFS and other post-infectious conditions. The entire series can finally be found here collection page.
FAIR data collection
The proper use and re-use of large data sets can contribute to advances in research into diseases for which there are currently no effective treatments, such as ME/CFS and Post-COVID. That is why on Tuesday April 9, almost 50 researchers and data experts within the ME / CFS and Post-COVID consortia of ZonMw met in Zwolle. The goal: to establish a broad community to exchange knowledge and experience to make the data RIGHT from the beginning of the research. FAIR stands for Available, Accessible, Interoperable (infinitely) and Reusable.
The participants got to work under the chairmanship of Sjaak de Gouw. The day consisted of a segment where ZonMw employees explained the importance and urgency of retrievable and reusable data. This was followed by passionate demonstrations about the international importance of FAIR data and biobanks. The data experts from the consortia present showed what is already happening in this area in which we can be involved. During interactive workshops, researchers and data experts worked to make agreements to make data better and more comparable, so you can get more information from the same data collections. And that goes for all patients who are waiting for research results, which we hope will provide the key to better diagnosis and treatment.
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