History of NICE decision to set up 2020 Committee

This hopefully helps, https://meassociation.org.uk/2017/0...ate-its-guideline-on-mecfs-20-september-2017/

 

There's possibly a bit more info here. Charles might be a good person to check in with if there is time.

https://meassociation.org.uk/2017/0...saga-how-we-got-to-where-we-are-24-june-2017/

 

https://meassociation.org.uk/2011/0...ine-on-mecfs-next-review-will-be-august-2013/

 

I don't think Wilshire et al was published until 2018.

 

I seem to recollect there were statements from NICE initially saying that they were considering whether a review of the guidelines was needed and then that they consulted with the previous guidelines committee or with some members of the previous committee, who advised there was no need to review the existing guidelines. However as always my memory is such that I am unable to recall where I read this.

Presumably this consultation of the old committee did not include the lay representatives who had previously resigned over the final content.

It was then at this point the charities, Forward ME, etc objected and that the political ructions arose, leading NICE to back down and agree to a complete rewrite of the ME/CFS guidelines.

 

I don't think it was the PACE reanalysis. If you look at the NICE surveillance review in 2017, they flagged the IOM report, Montgomery v Lanarkshire Health Board (2015) and Keith Geraghty's paper on patient surveys (see Appendices B and C from the links upthread).

 

NICE Guidelines must be assessed and aligned with any new legislation.
So anything between 2007 and 2017.
If not assessed against the new.legislation and Statutory instruments they are technically non compliant and possibly unlawful...
Well that's what I stated to them on the phone in 2017.... they could potentially face a JR of the decision Not to review.

 

This one was 2018: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

This one was December 2016:
https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724?journalCode=rftg20

This was earlier in 2016: https://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/

 

I appreciate I'm probably far too late to this thread to be of any use - but my recollection is that the 2017 review started because NICE was obliged to carry out a review of the 2007 guideline a fixed number of years after it was published. Initially NICE's surveillance committee reviewed all the new research that had been carried out since the last review (in 2011) and concluded that there was nothing to justify updating the guidance - which prompted an angry reaction from patient groups and other stakeholders. It was that reaction that led NICE to announce the full guideline review in late 2017.

 

I seem to recall working on some response document with a tight deadline around July 2017. I remember as I was camping / glamping at the time and had to use a hotspot off my husbands phone to get online!

 

Responding to myself here... I've just gone and refreshed my memory. NICE used to review all their guidance every 3 years. THE ME/CFS guideline was originally published in 2007 and was therefore scheduled to have it's first review in 2010. However NICE delayed publishing that review until 2011, so that they could incorporate the results of the PACE trial. The next review was then due in 2014 - but in 2013 NICE decided to create a 'static list' of guidelines that didn't need updating so regularly, and they placed the ME/CFS guideline on this list. This decision was challenged (as @adambeyoncelowe explained in post #10 of this thread) and in 2015 NICE consequently decided to bring forward the next review (which was at that point not due to take place until 2019) to 2017.

And then - as I explained in my last post - in 2017 the surveillance committee claimed there was no need to update the guidance and...

 

TC?

 

I guess Tom Chivers the journalist.