Sense about Science (UK) and subjective outome measures

[rvallee]

But it is a myth, isn't it? We have been asking patients about pain and fatigue since trials began.

I think it's more about the expansion of using sets of generic questionnaires like the BPS crew use, especially the formulaic methodology for all things "MUS" and "FND", "kept in check" by things like systematic reviews. That's certainly a recent development. Problem is those added layers actually remove meaning from those reports. It's almost impressive to actually ask more questions and ending up knowing less than asking the simplest questions.

 

[Jonathan Edwards]

That's certainly a recent development.

But is it. I thought Chalder was doing this sort of thing thirty years ago.

 

[rvallee]

But is it. I thought Chalder was doing this sort of thing thirty years ago.

Fringe use isn't new, widespread adoption and recognition is relatively recent. Especially as primary outcomes that are meant to be the be-all-end-all, like arguing that PACE "proves" that ME is psychological. Even though it's a pragmatic trial, and had null results anyway.

Then again, maybe it was always this bad and it's just that none of it ages well and decades of such practices have stretched the illusion to its limit. When things like Cochrane reviews are held as the "gold standard" despite being, at least in the case of the "CFS" reviews, essentially devoid of substance and wildly misleading, things have clearly been broken for a while.

But the NICE guidelines showed a clear increase, from a handful of trials in 2007 to literally hundreds since then, all on the exact same formula. It's like everyone is cramming to take advantage of this period of... loose, shall we say... accountability.