As some of you know, I decided to move forward with tethered cord surgery (SFT) this August with Dr. Paulo Bolognese. I will be blogging about my surgery journey in case it helps others walking this path. Of course, my story is only one of many, but I have certainly benefitted from hearing about a … Continue reading How I decided on surgery for occult tethered cord syndrome
Month: July 2021
We are failing people with very severe ME/CFS
Cort Johnson kindly published a piece I wrote - more of a manifesto - on my reflections on advocating for people with very severe ME/CFS. This piece struck a chord for many. There are many areas needing attention - I hope to work with others on some of the suggestions I outline in my article … Continue reading We are failing people with very severe ME/CFS
Frozen in Amber 