Groenevelt, I P Irene, de Boer, M L Marjolein · Social science & medicine (1982) · 2023 · DOI
This study looked at how seven Dutch women with ME/CFS and other contested illnesses used video blogs (vlogs) to share their experiences online. The researchers found that these women felt their knowledge and experiences were often discredited because of prejudice against their illnesses—a problem called "epistemic injustice." While vlogging helped some women feel more empowered to share their true experiences, they still faced challenges from YouTube's design and social pressure to soften their messages.
This research highlights a critical but often overlooked dimension of living with ME/CFS: the social and epistemic burden of having one's illness disputed or discredited. Understanding how patients navigate these challenges through digital platforms can inform patient advocacy strategies, help clinicians recognize epistemic injustice as part of the patient experience, and demonstrate why respectful recognition of patient knowledge matters for wellbeing.
This study does not establish that vlogging is an effective clinical treatment or universally beneficial intervention for all ME/CFS patients—experiences were diverse and ambiguous. It cannot determine causation between platform design and epistemic injustice; it only describes the experienced barriers. The findings cannot be generalized beyond the specific Dutch context or the seven participants studied.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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