2018: Discussion on the NICE procedure: what to expect next?

Are these comments still available on the NICE website somewhere?

 

"The fundamental mechanics of the ship remained water tight and at no time were the ship or its passengers in peril until it safely docked exactly where it was supposed to."
Really; no patients in peril or harmed...???

 

Yes, apparently they can be found here: https://www.nice.org.uk/guidance/cg53/history

 

Thanks! Nearly 600 pages of general comments! Wow! https://www.nice.org.uk/guidance/cg53/documents/general-table-of-comments2

 

Not sure if this has been posted before:
Systematic Evidence Review to support the development of the NICE clinical guideline for CFS/ME in
adults and children
from 2005 (I think it was known as the York report)
https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-appendix-1-pdf-196524110

 

A friend wrote today, "I read this ages ago and can't bear to read it again! But a couple of things which struck me again just from this extract:

1) It's odd (but telling?) that he describes it as 'a prosperous voyage' - you wouldn't have thought that 'bringing wealth and success' or 'successful in financial terms' (the first two definitions of prosperous from a quick Google search) was the point of a medical trial would you?

2) I thought the point of a medical trial was to FIND THINGS OUT ie you would NOT KNOW THE DESTINATION at the out set would you (unless you were hell-bent on getting to where you wanted no matter what.....)

 

So in 2007 the behavioral stuff passed the initial good quality evidence criteria ?

I want to know how many of these meetings dr S is attending.

I see no reason not to lobby on mus and Iapt in the meantime, as the nice thing quietens for official stuff. I also think we should be lobbying on MRCresearch funding who’ve seemingly offered no response to the formal request for specific funding made by CMRC members earlier in the year. We would have much more due caution regarding activities and rehabilitation as we are going to bizarrely see “exercise as treatment “ the main debate once again if we had serious CPET research highlighting our exertion issues going on in uk.

 

I can only skim but the incompetence and indifference are shocking. This was clearly a process that had predetermined conclusions and no evidence would change those.

Legitimate objections were all brushed aside as inconsequential. All objections that were as true in the late 80's when this nonsense began as they are true now. They mostly center around the fact that their conclusions do not match patient experience but in their opinion this is not relevant because they know they are right.

Same as the objections to the PACE trial. Same as the objections to the Cochrane review. Same in every country where this has been tried. Same with every individual study that has been tried.

All evidence is against them. Competent researchers are against them. The overwhelming majority of patients are against them, very likely all of them if we could exclude misdiagnoses. But clearly it is all of this that is wrong and there is nothing even slightly imperfect to their logical fallacies and disastrously unscientific work.

So all the objections we have now were raised in 2006, they made no difference. All those objections are as true today as they were then and it made no difference. They are all recorded for posterity and have remained correct for decades and still it is us who are wrong and people with no personal experience with this disease who are 100% correct and infaillible.

But sure, let's trust the process and wait until it has completed its review, in two freaking years, to comment on how broken and sadistic this all is.

 

I seem to remember that several competent participants were excluded for being suspected to be "attached" to a single perspective.

Double standards, clearly.

https://twitter.com/user/status/1075041059418333184


As someone pointed out, Jo Daniels was the one who tried to do the shopping bag study. Oh, how we should not miss out on that level of world-class expertise!

 

So how can we know how independent these NGC people are, and if they are immune to (or already infected by) the BPS bullshit?

 

I think we met some of these people at the scoping meetings. My impression is that they will tend to believe what they read. But they are well aware that there is discontent amongst the troops out there and that they may need to justify themselves. I don't think they will be attached to any ideology. Those I met seemed to be youngsters in their twenties with no professional healthcare training. They may want to defend their standard procedures but it should not be too difficult to point out where those may be flawed.

 

Interesting comment

 

So in this light, the delay of the NICE guidance draft by recently statements of RCP seems a big contradiction.

 

It just means that different people are shouting louder at RCP I think.