Moderator note:
This thread, to discuss preparations and advocacy efforts in relation to the NICE Guidelines Review (due in Aug 2013) was spun off from a discussion on a PACE Trial thread
According to this page, a new group, NCGACC, will be reviewing the guidelines in Aug 2013
http://guidance.nice.org.uk/CG53
Contact here:
http://www.ncgc.ac.uk/Contact/
About them:
http://www.ncgc.ac.uk/About/
Methodology for the review:
http://www.ncgc.ac.uk/Guidelines/Methodology/
I think there is an argument to simply dismiss the PACE findings saying the small movements clearly disprove their original behavoiural and deconditioning theories.We need to have justifications but not necessarily go into all the detail all the time.
Then the emphasis should be on promoting other results such as Fluge and Mella, work on natural killer cells and Apligen as a demonstration that there are clear issues with the immune system and that these should form the basis of future treatment plans.
The big question is who will be on the NICE guidelines committee since this will determine the outcome. Remember those shouting loudest about evidence based medician are those most willing to ignore evidence that doesn't fit their theory.
Ideally NICE would be in a position where it will be too embarasing for them to dismiss all the new evidence as they know sucesses in other countrys will be noticed as will their failure to look at new evidence.
This thread, to discuss preparations and advocacy efforts in relation to the NICE Guidelines Review (due in Aug 2013) was spun off from a discussion on a PACE Trial thread
According to this page, a new group, NCGACC, will be reviewing the guidelines in Aug 2013
http://guidance.nice.org.uk/CG53
Contact here:
http://www.ncgc.ac.uk/Contact/
About them:
http://www.ncgc.ac.uk/About/
Methodology for the review:
http://www.ncgc.ac.uk/Guidelines/Methodology/
Gods. You HAVE to luv statistics don't you?! Soooo transparent.
I think we need to be cautious with the way in which any 'defence' is mounted. Simple is always best in my experience and whilst the calculations used in PACE (esp. the headline attracting figures) might not be straightforward, anything 'we' produce should be as clearly explained as possible.
Now I'm recovering from my meeting, I'd be happy to help try and gain some endorsement from any one of the main charities. I'll try and establish if they even want to go down this route first I think. I'm actually not sure what the charities are all doing in preparation for the NICE Review at the end of 2013 but it seems clear that at least the MEA are preparing themselves for some defence of the PACE findings, and of the provision for the pertinent 'management strategies' contained therein (or not).
I think there is an argument to simply dismiss the PACE findings saying the small movements clearly disprove their original behavoiural and deconditioning theories.We need to have justifications but not necessarily go into all the detail all the time.
Then the emphasis should be on promoting other results such as Fluge and Mella, work on natural killer cells and Apligen as a demonstration that there are clear issues with the immune system and that these should form the basis of future treatment plans.
The big question is who will be on the NICE guidelines committee since this will determine the outcome. Remember those shouting loudest about evidence based medician are those most willing to ignore evidence that doesn't fit their theory.
Ideally NICE would be in a position where it will be too embarasing for them to dismiss all the new evidence as they know sucesses in other countrys will be noticed as will their failure to look at new evidence.