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what was this?

this is the best approach with Tucker Carlson.

Ah, I see--thanks for the explanation. I didn't realize that just from the article. It's the first I'd heard about the concept of a "pacing coach." I guess it would be good to have a support person but should learning to pace really require paying someone to help you?

did she write about brain retraining programs? I didn't see that in the article. I'd never heard of "pacing coaches" before.

what did her author's twitter thread have to say? I haven't read the Times article--it's behind a paywall.

Right. it's listed as an outcome but doesn't seem to be one of the formal outcome measurements, especially because they are using it only at end-of-treatment, not at the follow-up point.

Exactly. it can't.

Has NIHR cut off Cochrane's funding, and if so, why?

Interesting. I think other studies generally average over the seven days (I think it's usually that, not 14 days, in these studies) and do not break down the changes across the time period. Or maybe they do?

thanks!

To be clear, I was meaning claimed success stories--we have no idea that the treatment had any impact at all

wow, very thorough! Hope you get a response. I feel sorry for the student, who is obviously being steered wrong. I just posted on Facebook about it.

Ah, thanks!

If I were writing this piece, i would have tried to interview patients who felt helped by the treatment and presented at least one such story, while also explaining that anecdotal recoveries do not mean anything scientifically and that the science doesn't show that at all. But part of the story...

i can't tell if the actimeter data are considered actual outcomes. Where do you see that this will not be measured at the very end?

The subtitle about "the impact" of emotions presupposes the conclusions. Unfortunately, given that it's a cross-sectional survey, it will be impossible to tease out cause and effect. It seems pretty clear that these illnesses will be associated with troubled emotions/relationships. We know that...

I haven't read it yet, but I know the reporter and she's very smart.

thanks. yeah, I see that. that explains why it was written this way. it's weird that it's still up, as if time has stood still for six years.

This is a current publication??

this is interesting. I never heard anyone in the 80s or 90s, before protease inhibitors changed the picture, describe their HIV-related symptoms in anything remotely resembling what I hear in relation to PEM. Fatigue, yes.