Long COVID still has no cure — so these patients are turning to research
Observing some people close to me with chronic health conditions, it's striking how useful Reddit frequently ends up being. I think a core reason is because trials aren’t run for a lot of things, and Reddit provides a kind of emergent intelligence that sits between that which any single physician can marshal and the full rigor of clinical... See more
To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear—because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need.
Meghan O'Rourke • The Invisible Kingdom: Reimagining Chronic Illness
"Would diagnosis matter so much in a world where all people and patients had more power – one where we did not have to constantly prove ourselves to employers, to medical professionals and to the benefits system to get our fundamental needs met? A system of social organisation in which healthcare and other healing processes centred informed
... See moreFor example, people with LC identified to have features of post-exertional malaise, often associated with ME/CFS, can benefit from applying a pacing activity management strategy (28, 146, 147). Other non-pharmacologic interventions beneficial for post-exertional malaise, sensory sensitivity, orthostatic intolerance, and other symptoms may also be... See more