UpToDate: Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome, 2022, Jenkins

We have a thread from 2018 when a member tried unsuccessfully to get UpToDate to remove their recommendation of GET/CBT for ME/CFS.
UpToDate ME/CFS information
If you have an information about it's section on ME/CFS now, please post it on that thread.

 

Thank you @Wilhelmina Jenkins for sharing your story in this way. The more clinicians see coherently expressed and honest accounts of patients' experience the better, and yours does this very well.

 

I found this to be a great patient account, useful for new patients and for health care professionals to read. It conveys the awfulness of the illness, while not eliminating hope. I'm sorry that you have been through so much @Wilhelmina Jenkins; I hope you, and all of us, get some answers soon.

I like the proposal of 'cognitive disruption' as a replacement for the term 'brain fog'. Your account reminded me of my early years, when I was trying to deliver quantitative cognitive work and could not manage it, despite trying so hard and despite it being something I could normally achieve easily. And feeling desperate about letting people down in a field where negative conclusions would be drawn not just about me, but also about the capacity of women in general.