UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Hey wait, that is a little bit different then in the pauze puzzle thread I think?

There I have

8/7 quality assurance sign off.
26/7 resignations
30/7 sign off guideline by Guideline Executive

Which is about the same, but looking at NICE's answers it seems like the 8/7 was the actual sign off and 30/7 the approval for embargoed release?

 

@Sean @friendtofronds yes exactly thank you! good to know what page it's from too

@Arvo that'd be awesome thanks
I finally found them under trial info

ETA just seen other responses too.... fantastic thanks so much @Andy @JohnTheJack

computer dying have bookmarked will check out later

 

Yes, 30 July sign of by Guidance Executive.

Sign off by Guideline Committee happens before sign off by Quality Assurance (8 July) and sign off by Guidance Executive (30 July).

So the order is:

Committee sign off (no date available).
Quality Assurance sign off.
3 committee members resign.
Guidance Executive sign off.

The Q and the A given to the Q was:

The date on which NICE's Guidance Executive signed off guideline GID-NG10091.

Response: NICE’s guidance executive approved the guideline for embargoed release on 30 July 2021.

According to the Manual, Quality assurance process and Guidance Executive sign off are two processes.

 

https://www.nice.org.uk/process/pmg20/chapter/finalising-and-publishing-the-guideline

11.1 Quality assurance of the guideline
After changes agreed by the committee have been made to the guideline in response to consultation comments from registered stakeholders, the guideline is reviewed by NICE staff with responsibility for guideline quality assurance. They check that the changes made to the guideline are appropriate and that the developer has responded appropriately to the registered stakeholders' comments. Further changes to the guideline may be needed; the developer continues to maintain an audit trail of all the changes. The NICE Pathway (everything NICE says on a topic in an interactive flowchart) and any supporting resources are amended in line with any changes to the guideline. These also undergo quality assurance and are signed off within NICE.

Equality impact assessment
Before the guideline is signed off for publication, the equality impact assessment is updated by the developer and the committee chair to show whether any additional equality issues have been identified during consultation, and how these have been addressed. The equality impact assessment is published on the NICE website with the final guideline.

11.2 Signing off the guideline
NICE's Guidance Executive considers and approves guidelines for publication on behalf of the NICE Board. The Guidance Executive is made up of NICE executive directors, centre directors and the communications director.

When considering a guideline for publication, the Guidance Executive reviews a report from NICE staff with responsibility for guideline quality assurance. The report details whether the guideline:

• addresses all the issues identified in the scope
  
  
• is consistent with the evidence quoted
  
  
• was developed using the agreed process and methods
  
  
• was developed with due regard to the need to eliminate discrimination, advance equality and foster good relations
  
  
• will lead to a resource impact when implemented.
  

If any major issue is identified by the Guidance Executive it may be necessary for the committee to meet again to address the problem.

The Guidance Executive does not usually comment at other stages during the development of the guideline.

 

I'd add:
- a belief that you can tell when the individual person in front of you is improving or deteriorating due to therapy versus when they're improving or deteriorating due to spontaneous change/other factors.

 

1. istr there are lots of pieces of evidence that GET harm was denied explicitly. i distinctly recall a youtube clip years ago of a training session with, probably, c***re g*r**a explicitly saying, flat out, that there is no harm from the treatment. anybody recall this?

2. media reports are surprisingly bad compared to recent better coverage, with none getting it right. either the propagandists have improved their work by getting unsourced falsehoods in there or the media are just bad.

some media reports look computer-generated. it is strange. maybe new propagandists were hired? the usual smc stuff is not the same any longer.

so we have to fix e.g. tiredness. fatigue and tiredness and imo the activity domain stuff need to be fought. even with confusing mentions of pem, the disease is characterized as "some activity thing".

the message is: problem solved no need for biomedicine we have experts [who should be consulted]. why is a professional needed for activity management in media accounts in preference to the mention of the very existence of the many symptoms of the disease? just because it mysteriously [not] occupies the guideline doesn't mean the media have no responsibility to talk about the basic facts of the disease.

the very idea of [1] what the disease is, and [2] the seriousness of it is completely lost on most or all media accounts. that is a feat. why no mention of coi? why were charities rarely consulted?

oh screw it please please ed yong miriam tucker monbiot whoever write about this including meta. and mention the chronic pain and lc guidelines. we must help those.

also why so many media mentions of non-directive or unlabeled cbt? mention of the negative [directive bad] should be enough. the positive [good for whatever it is good for] is taking column inches from listing many effects and needs of the disease.


one fix: the guideline says it is multi-system. articles must say what that means [e.g. meicc lists features of the disease and classes of features also [neuro, immune, etc. we could also supply a picture of severe which would also help nix the tiredness claim.]

 

If that's the one where another clinician is playing the part of a patient, the links for these presentations are on a thread in another place.

 

thank you @NelliePledge i do not have it in me to look but i will guess that you got it right.

also, videos can be downloaded as a guard against destruction of evidence. e.g. youtube-dl.

 

that page is gone. did anyone archive it?

 

Here you go: https://web.archive.org/web/2019041...oppn/depts/pm/research/cfs/patients/self-help

@Sean - was it still online when you posted it? Would be interesting if it was being changed due to NICE.

Looks like it was - google had these pages online on the 29th: https://webcache.googleusercontent....+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-b-d

A very meta archive of the google cache, in case that's of value: https://web.archive.org/web/2021110...+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-b-d

Looks like this is their new page: https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

I always liked this bit from their old pages, as a possible explanation for patient surveys showing disatisfaction with CBT:

https://web.archive.org/web/2019041...c.uk/ioppn/depts/pm/research/cfs/health/index

 

Not sure I remember their old CBT page [edit: David noticed that actually this is still up - it's in a different section of the KCL website]:

https://web.archive.org/web/2019040...ifference/22-CBT-for-chronic-fatigue-syndrome

 

Did you have a link for them? I couldn't see them on the BMJ page but I remember just being blind to them previously.

 

https://twitter.com/user/status/1455110233655848960

 

Great thread from @Brian Hughes with summary of media coverage.

From stock photos we obviously need surgical help for the hand- stuck- to- head issues....

https://twitter.com/user/status/1453863342762774532

 

This page is still up, actually.