I’m burning my way through this book, which was just released last week. It’s a compilation of first-person essays and advice from twenty Long COVID patients and experts. Curated by long-hauler Fiona Lowenstein, The Long COVID Survival Guide strikes me as street-level gut-punch practical. I don’t think any of us – patient, family, clinician or government – can feel we understand this condition without reading these essays.
I was hooked when I discovered, in the first patient story, that hives can be a result of Long COVID … which explains the weird, unexplained hives my wife had 4-6 weeks after COVID. Nothing like some front-line patient reality!
That’s a strong example of a big shift that’s happening in medicine: shifting away from expecting doctors to know everything important, and toward doctors actively partnering with the sick people. And by “partnering” I don’t mean asking patients’ opinions: I mean actually sharing the work, acknowledging the value of patients’ work, and sharing decision making – not just on individual cases but on development of remedies and priorities for research.[Read more…]