ME Association guest blog: "There’s No Point in me having a Netflix subscription or an Audible account" by Anna Wood

https://www.meassociation.org.uk/20...-audible-account-by-anna-wood-07-august-2019/

 

This is a blog I very much identified with. Before I was bedridden I was disproportionately affected cognitively and socially and would like to see more research into the severely affected as to why some of us are like this even when physically mobile and others are devouring high end novels, still highly social or even working but from bed.
The brain shut down is the worst thing, especially as in my case it’s not accompanied by sleep. I saw ron davies of his son say the brain goes into survival mode
Most of the research I have seen on cognitive dysfunction has been trying to ascertain if it actually exists and tends to be on information processing speed and brain region use in the mild-moderate
Btw that picture says it all

 

This is my exact experience too. If I could only cure one aspect of my illness as it is now, I would chose the cognitive impairment, even though I am in bed 23+ hours every day. The cognitive symptoms are what hinders my quality of life the most.

 

I agree. Again because it’s usually only severe in the severe it’s understudied and under recognised