Then, I got an illness in which every patient, no matter how Google-averse, no matter how little high school biology they remember, is more informed than most clinicians and researchers by dint of being a roving, self-monitoring, research site, a being that cannot help but gather data and seek patterns in self-preservation. My survival was dependent on the all-consuming investigation of my spiralling health, remaining up-to-date on a quickly moving field, and knowledge translation of my findings to my fumbling medical team, my caregivers, and the public health system. I was the best source of both data and analysis for an illness too new to have robust clinical guidelines.
Great analysis of this supposedly vital study. It’s such a shame that medical research and patient experience aren’t more connected - in ME/CFS in particular there is an extraordinary gap between what the medical system can offer and the proliferation of patient led wisdom on recovery
Great analysis of this supposedly vital study. It’s such a shame that medical research and patient experience aren’t more connected - in ME/CFS in particular there is an extraordinary gap between what the medical system can offer and the proliferation of patient led wisdom on recovery
Excellent article. Thank you.
My goodness so much to love here. Coming back shortly. X
Welcome!