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I'm a bit confused about why so much guidance is needed for 'pacing' anyway. I'm not a patient so I can't judge from personal experience. But isn't it a matter of two or three general sentences of advice, and then let people find their own way? I mean, it's a self-help mechanism, it's not a...

it would be great if you could slip in there that web-based CBT doesn't really do much for symptom improvement in IBS as well but now is being pushed to be offered to everyone who presents with IBS.

@Andy, thanks! I will mark them [sic] since they were in the letter as sent!

I assume, although don't know, that the moderate and severe patients were already diagnosed through appropriate criteria with ME or ME/CFS, whichever it is being called, and that PEM was a required symptom. The study seems to be intended to be a PEM-inducing study more than a fatigue study.

yes, I assume they will. but does the advertising standards agency get involved at this stage, when it is not yet available to anybody?

yes but they're not offering it yet. it's like they're branding it before they intend to launch it.

Hm, interesting. Great that she is called out!

In general, I think of regular CBT with a smart therapist as potentially useful in helping people adapt realistically to their circumstances and find ways to accommodate that. I can see where that might help with "stress"--anxiety, depression or whatever. Like practical guidance in not obsessing...

Thanks! I read a lot of Emerson in my American Romantics course in college (Emerson, Thoreau, Hawthorne, Melville, etc). That was in, uh, 1976. So, you know. A while ago.

Ah yes, ok. the hobgoblin of little minds part I recognize, although I wouldn't have been able to attribute it to Ralph.

I will have to look that up. I have no idea what that refers to. Is that Ralph Waldo?

This definitely seems to be true.

Until I went to Australia two years ago, I had heard them being used interchangeably. In Australia, I found that there was a clear distinction--that someone with PVFS might get all better after two years and so it wasn't ME. There were cases of athletes in particular who really seemed to be...

Exactly. And writing up the circumstances surrounding the non-publication based on the public record and statements also does not depend on their cooperation or permission.

This sounds like a good idea--a case study.

loved that scene. maybe it can be digitally redone with a shopping bag?

@Simon M don't forget this analysis from last year: https://www.frontiersin.org/articles/10.3389/fped.2018.00435/full

well I have some sympathy for them on that aspect because there really aren't good biomarkers to use for IBS studies. The findings were all subjective questionnaires--the main one a symptom severity scale for IBS that's a fairly standard thing. And it showed very modest improvements on that...

it is a very badly written sentence that is meant I think to read: "with clinically effective and cost-effective treatments..." the word "effective" is meant to relate to both clinically and "cost-"--or so I think.

well, actually, Lightning Process was supposed to be mentioned there too. I haven't exactly really decided what I'm talking about yet.