Captions available via the Youtube of this episode:
I'm coming back from a year hiatus from The Canary Collective Podcast to share with you a conversation on disability resource access that I had with Alison Sbrana (she/her). Alison got ME/CFS 9 years ago after Epstein-Barr Virus (EBV) and now helps support other patients who have ME/CFS and Long COVID through her advocacy and support with organizations such as MEAction, Body Politic (@wearebodypolitic on Instagram) and even a CDC-funded panel of patient and doctor advocates. She's a co-author of the Long COVID Survival Guide.
Thank you, Alison, for sharing invaluable tips you have for "hacking" the broken healthcare system and getting SSDI / SSI / home health help with compensated caregivers who can do things like meal prep and other day to day tasks. It's giving me so much hope!
Body Politics (click here for the Support Group Slack for recommended practitioners): https://www.wearebodypolitic.com/
NPR Article on The Long COVID Survival Guide: https://www.npr.org/2022/11/18/1137661071/the-long-covid-survival-guide-to-finding-care-and-community
Follow Alison's Instagram: https://www.instagram.com/alisonsbrana/?hl=en
Follow more of Kaeley of KPH & The Canary Collective's work at http://www.canarycollective.org/
Support my (Kaeley's) medical treatment and music on Patreon: https://www.patreon.com/kph