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ME/CFS Science @mecfsscience.org · 03/07/2026

1) 🇧🇪 In Belgium, the Federal Knowledge Centre (KCE) published a 144-page report on ME/CFS. It measured the healthcare needs and priorities of ME/CFS patients (shown in the graph below) and recommends investments in research and specialist centres for ME/CFS.

Figure 25 - Priority rating of need categories in people with ME/CFS (n=744)

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ME/CFS Science @mecfsscience.org · 03/07/2026

2) The KCE makes scientific reports to guide policy. This report is part of the NEED project, which aims to identify healthcare needs in multiple medical conditions. They did a survey of 749 ME/CFS patients and conducted in-depth interviews with 19.

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ME/CFS Science @mecfsscience.org · 03/07/2026

3) The NEED project is compiling a database of these healthcare needs. For ME/CFS, they found a large impact on quality of life. Patients had a mean EQ-5D-5L utility score of only 0.36. This questionnaire is often used for estimates of disease burden.

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