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

 

[Utsikt]

Ror Preston on Xitter:

The results of the TREATME survey by
@OpenMedF are in, and provide a direct and important comparison between pacing and graded exercise therapy (GET)

The results are stark and clear:
Pacing helps
GET harms

 

[SNT Gatchaman]

Ignoring improvement and just comparing totals for any worsening category: much worse, moderately worse, slightly worse —

GET (162 + 57 + 27) / 299 = 82%, 54% being "much worse" (ME = 263, LC = 36)

Pacing (10 + 9 + 9) / 803 = 2.2%, 1.2% being "much worse" (ME = 684, LC = 119)

 

[Sasha]

I've just come across this survey. Obviously it can't offer strong conclusions about what works - it wasn't a collection of randomised trials on therapies - but does it offer even an approximate indication of which therapies might be worth prioritising for RCTs, or which theories of ME/CFS might be on the right track?

 

[Trish]

I don't think it's useful. My memory of the data collection was that it was largely promoted on Twitter as part of the early enthusiasm among people with Long Covid who were excitedly sharing their experiments with all sorts of treatments and egging each other on. Many were trying multiple things at the same time and claiming success after very brief experiments that were probably just random fluctuations.