ME/CFS Science @mecfsscience.org · 03/07/20262) 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. 1160
ME/CFS Science @mecfsscience.org · 03/07/20263) 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. 1182
ME/CFS Science @mecfsscience.org · 03/07/20264) The value for ME/CFS is lower than that of other diseases (Crohn's disease, Long Covid, psychotic disorders, and melanoma) that have been compiled in the NEED database. The graph below is not in the report, but I've made it using the data given here: zenodo.org/records/1... 1182
