Testing a Personalised Dysautonomia Management Protocol in Patients with Orthostatic Intolerance and a Diagnosis of ME/CFS or Long COVID, 2026, Barr+

I see they introduced 'pacing' after week 4 of the 8-week trial, but they acknowledge that many patients will have been pacing already. Sums up the pointlessness of it quite nicely.
It's just become standard at this point. More often than not the patients experiencing PEM who consult with clinicians will have tried exercising already, and failed many times. Still get recommended exercise, they must not have been doing it right, need a wise clinical hand. Or whatever.

Same with many trials that find no benefits to exercise, who have many times excused it on the fact that the participants were active enough to begin it. Or, in the case of PACE, will point to a similar trial that found no benefits. All of which negates the entire premise of the model.

It just never matters. The ideology is based around the idea that there is a right way to do it, that some people can't find it on their own, and that where rehabilitation specialists come into play. No one can explain that "just right way", it's always a unique special snowflake, but it can also be treated with the most generic bunch of bland ideas one can imagine.
 
I call it the Goldilocks theory.

Not too little, not too much, just the right amount, in just the right way.

Which, of course, requires a Very Serious & Expensive Expert to teach us how to do, because apparently we are morons who can't be trusted to know how to breath, sleep, move, eat, or wipe our own butts.
 
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