In the patient community, it seems somewhat common to refer to instances where PEM (or a crash) led to worsening of the condition which was permanent. I have however yet to find a reference to this in the literature, if someone knows of one, I would be grateful as it is of interest to me, thanks!
"Psychosomatic misattribution can also result in the prescription of harmful therapies such as GET, which can induce potentially permanent worsening of symptoms due to PEM [89,90]." (Thoma et al, link) I don't have the energy to chase down references 89 and 90 at the moment, but perhaps a useful start?
Thanks! Ref 89 leads to an interesting looking german study on doctor patient relationships in pwME. https://pubmed.ncbi.nlm.nih.gov/38062324/ I’ll be happily reading it when I have more energy.
The NICE guideline recognises it: See the glossary: https://www.nice.org.uk/guidance/ng206/chapter/recommendations#post-exertional-malaise
Trish it says long term but not permanent. I've never seen a published paper say permanent. The closest I've seen is this: https://pubmed.ncbi.nlm.nih.gov/36984572/
You're right, but any of us with long term worsening can't see into the future. Some people with very severe ME/CFS for years do gradually improve.
