Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process.
de Boer, Marjolein Lotte·Sociology of health & illness·2021
This study looked at how ME/CFS patients were involved in advising the Dutch Health Council between 2013-2018. The researchers found that patient representatives mainly shared medical/scientific knowledge about ME/CFS as a physical illness, avoiding discussion of psychological factors. While this approach helped patients be taken more seriously, it may have actually limited what kinds of knowledge and experiences patients could contribute, and it might reinforce incomplete understandings of the disease.