Welcome to Long COVID and ME
Musings, rants, and analysis on living with and recovering from Long COVID and ME/CFS.
Welcome!
Long COVID and ME are my two main diagnoses; that last part is a double entendre, meaning both ‘me’ (Amy) and myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. Over the last 3+ years of illness and attempted recovery, I have struggled to turn my brain off. I have learned so much about the science behind these illnesses, about our complicated and screwed up medical system and public health policies, about how those with invisible disabilities are treated, about how those who are dealing with multiple intersecting invisible identities are further sidelined, and on and on.
I have also learned so much about myself: my barriers to recovery, the deeply ingrained messages I hold around productivity and human value, how to grieve a life that’s not coming back, how to embrace the life that’s here now, and what excites me about the future.
This is not a newsletter where I summarize or analyze the scientific studies; I may geek out a bit on a study here and there, but I do not have the science chops to go deep, and there are already a few worthwhile Substack newsletters that offer this service quite capably (I recommend the Long COVID Weekly Newsletter).
I will also not be telling my Long COVID “origin” story in full. If anyone is interested in that, you can find 90% of the shebang on the Health Rising site in a piece I wrote called My Long COVID Disability Journey. (If you suffer from LC or ME, I highly recommend subscribing to Health Rising’s email list and joining its forums. Cort Johnson, who writes for and manages the site, is a journalist who not only lives with ME, he is a gentleman and a scholar, and he could use your support.)
Also, never fear - this is not a gloom and doom newsletter (all of the time :)). There will be a smattering of humor woven throughout as well as me occasionally opining on topics unrelated to illness and health.
Thank you for being here - enjoy the ride!
I also got Covid in March April 2020. Now in Year 3 of lingering symptoms. My heartfelt sympathy with anyone who has this. It has lowered my quality of life and longevity by quite a bit.
Hi Amy,
Thanks so much for liking my recent post. I too got COVID in March 2020. Recovery began many months later. I hope that you'll take the time to go back to earlier posts. The strategy that led me back to health is all laid out. My Substack is free and open to all, although I'm very happy to accept paid subscriptions. Kind regards...