Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation, 2026, Grach et al

Jonathan Edwards said:
And reading here I get the impression that PEM is an extremely variable category, such that it may be unwise to extrapolate from one case to another. We can advise people that others' experience is that pushing through is, in the long term, a bad idea. But if that gets enshrined in some stereotyped concept of PEM, bogus theorising and ungrounded treatments tend to rapidly follow. So we end up with these complicated recipes for energy management that just wear people out writing diaries for.
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We’re kind of dealing with this in Norway at the moment. The BPS people are really pushing the «PEM is normal» narrative, based on e.g. the DSQ.

But at the same time, «figuring out what works for you» is the mantra of the alternativ industry, so it’s difficult to get the point across that trying pacing is okay, but suggesting treatment X isn’t. They don’t seem to understand the difference between management and treatment.
Jonathan Edwards said:
I am getting a bit irritated by people giving seminars and discussing policy at meetings talking about 'pem' as a word the rhymes with 'them'. It seems a relatively new habit. My suspicion is that folklorisation will tend to rapidly follow, just like 'nets' for neutrophil DNA extrusions.
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It has always been pronounced like that in Norway. It don’t think it makes much of a difference. But I do worry about the lack of an understanding of what «PEM» means to the speaker and reader. We’ve seem this kind of issue recently with the DSQ v2.
 
Utsikt said:
We’re kind of dealing with this in Norway at the moment. The BPS people are really pushing the «PEM is normal» narrative, based on e.g. the DSQ.
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They're pretending it's DOMS and we're just confused/stupid?

It's not as if PEM is defined as an abnormal reaction, or anything like that, which would explicitly exclude this as being normal. Good grief it's like we're dealing with children who think they're so smart because you told them to go to bed and they're eating bread in the kitchen like the joke from the Simpsons. "But you said go to bread, bread, I'm eating bred" with a shit-eating grin.

Actually it's kind of like "the card says moops" (taken from Seinfeld, a common reactionary argumentative trope) except they put the error there themselves.
 
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