Lacerda, Eliana M, Kingdon, Caroline C, Bowman, Erinna W et al. · Fatigue : biomedicine, health & behavior · 2018 · DOI
This study describes how researchers in the UK created a biobank—a collection of biological samples and health information from ME/CFS patients—using input from patients themselves. By involving patients in the planning and running of the biobank, the researchers were able to build a resource that better meets the needs of both patients and scientists studying the disease.
ME/CFS research has historically been limited by insufficient biological samples and patient mistrust of researchers. This participatory biobank provides a crucial infrastructure for future biomedical studies while establishing a model where patient voices shape how their biological materials are used, potentially increasing participation and accelerating discovery of ME/CFS mechanisms.
This study does not demonstrate that the biobank has led to new discoveries about ME/CFS causes or treatments—it only describes the biobank's creation. It also does not prove that participatory approaches produce better scientific outcomes than conventional biobanks, as no comparative data are presented.
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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