Search results

This is an example of what I was thinking of: https://www.s4me.info/threads/uk-parliamentary-debate-today-thursday-24th-january-2019.7826/page-16#post-138969 But having reread that I think I may have been taking Jonathan's comment out of context a bit, because for ME/CFS there are better...

I think in the past @Jonathan Edwards has said that subjective outcomes in unblinded trials can sometimes be OK, provided they are only secondary, and that primary outcomes are objective; the objective outcomes can then be used to assess the validity or not of the subjective ones. But I may have...

[my bold] This clearly demonstrates total unawareness that ME/CFS is different to other fatiguing illnesses.

NEM's clear recognition of this must surely have implications beyond the LP, because ME/CFS trials for CBT and GET have been plagued with the same sort of bias.

See this post: https://www.s4me.info/threads/adverse-outcomes-in-trials-of-graded-exercise-therapy-for-adult-patients-with-chronic-fatigue-syndrome-2021-white-etherington.20767/#post-347678 pdf attached

Interesting that PACE (unless I've missed something, which is possible) only used a 1994 suggestion (cannot call it a definition) of what characterises PEM, rather than the 2007 NICE guideline. I know PACE might have just missed that boat, but weren't some PACE authors involved in that guideline...

Which again suggests PACE may not even have been measuring PEM at all. Yet again - we need to see the data!!!

The 2011 Lancet paper, ref 12 refers to ... https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-3-25 ... when speaking of PEM definition. In that paper there are 3 mentions of PEM, the most expansive one being: To be fair this paper is 1994, but it clearly: Presumes PEM to...

Maybe this, from the 2011 Lancet paper: I think it would be necessary to see the data behind this to know the sense of it.

Absolutely. Which is where my worries from a couple of months back came from - these folk are past masters at influencing outcomes ( :p:rolleyes::oops: ), and it would be appalling if they did somehow manage to influence the NICE guideline outcome with all this eminence-driven whining of theirs.

We have to remember that the evidence threshold needing to be crossed for demonstrating something to be safe is not the same threshold needing to be crossed for demonstrating it to be unsafe, not should it be. Otherwise the evidence level could be just on the unsafe side, and the tiniest change...

[my bold] Whilst still including the BS spin clause that it's all the patient's own fault if they still end up in a mess.

If they are so confident of how right they are, then put their money where their mouth is and release the rest of the PACE data; they clearly should have nothing to fear by doing so. And they have demonstrated they still have the resources available to be able to do that.

Which therefore still means the scale induces bias.

It is very clear the main objective of this paper is to impact the NICE guideline review, given how it comments strongly on the implications of the current draft guideline being ratified.

I think there is an inherent bias within the CGI scale, given that someone could feel noticeably worse (and thereby of clinical significance), albeit not much worse. In which case their likely choice is going to be 5 on the scale, minimally worse, and thereby allows these analyses to consider...

Maybe resubmission of the FOI request is needed, given they have clearly managed to overcome their primary obstacle to fulfilling it.

Yes, I seem to think that it was only on a survey I first encountered this, and have always felt it to be very contrived.

... is the big question. How indeed.

How you can manipulate language :rolleyes:. In the abstract from the original paper: In the response: Common usage understanding of "satisfied" is not at all the same as what will be commonly understood by "slightly satisfied". When scientists stoop to this pathetic misrepresentation of their...