The difficulties of conducting intervention trials for the treatment of [ME/CFS]: Expert testimony to NICE guidelines committee by Jonathan Edwards

[Jonathan Edwards]

So there are reasons to suspect then may be some new reason why NICE rated the evidence as low quality or very low-quality this time around.

Or maybe jus' the ornery patients on the committee, guv'ner.

 

[Sean]

I hope there will come a day when those patients can tell the full story of what happened behind the scenes.

 

[Sly Saint]

Trial By Error: Tack’s Take on 2020 Studies; Professor Edwards’ Statement to NICE
13 January 2021
By David Tuller, DrPH
https://www.virology.ws/2021/01/13/...-studies-professor-edwards-statement-to-nice/

 

[FMMM1]

Or maybe jus' the ornery patients on the committee, guv'ner.

I haven't followed this closely but the standard training for policy development involves an attempt to get you (policy maker) to approach the issue systematically. E.g. PESTLE - political, economic, science, technological, legislative, environmental or whatever.

In this case Parliament has been active (parliamentary debate approx. 2 years ago?) and the government and opposition have been critical of the NICE guidance --- hence the review.
I assume NICEs reputation has been dented by this shoddy work (old guidance).
So the context for this review was to ditch the old --- not unreasonably.

The fact that NICE's copybook has been blotted means that anyone trying to back the old (CBT/GET) had better have some good evidence. The fact that PACE was crap (no objective measurement of outcomes - e,g. activity monitors as per Fluge & Mella) meant that it couldn't be defended --- those who pointed out that it was flawed couldn't be ignored.

Hopefully there will be some lessons learned --- bit worrying that the old guidance was adopted and that that might reflect a different context at that time.

I really liked your summary of what is acceptable in terms of methodology [https://www.s4me.info/threads/the-d...mittee-by-jonathan-edwards.17760/#post-317174] @Simon M

 

[rvallee]

Or maybe jus' the ornery patients on the committee, guv'ner.

No accountability like... someone holding people accountable.

If recent years have changed one thing, it's that the saying that enforcement is 9/10 of the law is vastly inadequate. It's really 9.9/10. Behind closed doors, all sorts of rules can be bent. And if someone breaks a rule and no one is there to hold people accountable, well the rules are still broken and people should be accountable to it later on but no one will hear about it until then.

But the honor code. Oof. Nope. Doesn't work anywhere anytime ever. Even in the most favorable circumstances, self-interest wins, even above duty.

 

[MSEsperanza]

Recently was reminded that there's a translation of Jo's testimony into German.

Translation was commissioned by the German charity Fatigatio -- here's the link:

https://www.fatigatio.de/fileadmin/...PDFs_Sonstige/NICE_Kommentar_Prof_Edwards.pdf


Thank you @Pustekuchen for making me aware of this.