Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+

[forestglip]

Health Rising: 'TREATME: the Open Medicine Foundation’s Mammoth ME/CFS and Long COVID Treatment Survey Results'

 

[wingate]

I haven’t read the paper, but what stood out to me was the information in Figure 2, and particularly how the efficacy of various treatments compared to the efficacy of pacing, a treatment that the majority of respondents said was at least slightly helpful.

In my experience, lack of pacing is very likely to make my symptoms worse, but even strict pacing hasn’t made my symptoms improve over time.

So, even if there were several “helpful” treatments, but they were only as helpful as pacing, then none on this list in fig. 2 would seem to be too promising to me.

 

[Sean]

In my experience, lack of pacing is very likely to make my symptoms worse, but even strict pacing hasn’t made my symptoms improve over time.

This.

Pacing certainly helped with an initial and welcome improvement, but I quickly hit a ceiling that has never gone away. Beyond that it mostly has just helped slow down the rate of deterioration.

But it is still a very unsatisfactory outcome overall.

 

[Nightsong]

An associated commentary by Komaroff in PNAS ("Growing recognition of post-acute infection syndromes"):

Link | PDF