The “Permanent Worsening” Phenomenon

[Yann04]

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!

 

[Nightsong]

"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?

 

[Yann04]

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.

 

[Trish]

The NICE guideline recognises it:

See the glossary:
https://www.nice.org.uk/guidance/ng206/chapter/recommendations#post-exertional-malaise

Relapse
A sustained and marked exacerbation of symptoms lasting longer than a flare‑up and needing a substantial and sustained adjustment to the person's energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare‑up or a relapse. Relapses can lead to a long-term reduction in the person's energy limits.

 

[DigitalDrifter]

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/

The range of ME/CFS patient recovery was 1-64 days, while the range in CTL was 1-10 days; one subject with ME/CFS had not recovered after one year and was not included in the analysis.

 

[Trish]

Trish it says long term but not permanent.

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.