Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

Faaaaaaantastic!

 

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

"Expected publication date: TBC" now updated to "29 October 2021"

 

No minutes (or summary minutes) posted yet from Roundtable or GE meeting(s).

 

Just rung up and asked about minutes of Rupert Franklin who says they will be published with Guideline tomorrow!

 

Thanks, which ones? Roundtable or Guidance Executive or both?

 

Victor Meldrew moment....... wtf...?

Just received..
Dear Colleague,
There is now an updated version of the guideline in the folder.
All log in details remain the same.


Edited to remove contact details of sender.

 

I asked about Roundtable

 

Our guideline team spotted an error in the original version that NICE supplied, so we queried it and NICE moved quickly to correct it.

 

I am now a genuine conspiracy theorist! Thanks for the explanation. I will go back to my weeding.....

 

From the Timeline of Key Events:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

28 October 2021 Stakeholder list updated


Project documents page:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents


Stakeholder list updated

• Stakeholder list PDF 184 KB 28 October 2021

https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list-2


Latest version (Updated 28 October 2021) attached (stakeholder-list-2.pdf)

Previous updated version also attached (at least I think this is the version that preceded the 28 October 2021 version, unhelpfully the file names are not dated).

 

I notice that the changes to the August publication date and the various events while the pause has been happening, other than the roundtable event, do not make it to the time line, and no documents are listed relating to the pause, other than the the two relating to the roundtable event.

It will be interesting to see what ultimately emerges from the FOI requests about the circumstances around the August pause or whether there will remain an element of mystery.

 

I've just had an email from Rupert at NICE in response to an email I sent this afternoon asking why the substantive error I pointed out hadn't been corrected (or, rather, I asked had it been considered, given that there was no changes to the text).

It turns out that they uploaded the wrong file to the portal. The correct file has now been uploaded, so if you're a stakeholder and downloaded the files this afternoon you might have to login to the portal again and get the right document!

 

Just a reminder that although the CG53 was published in August 2007, not all Tools and resources materials had been prepared at that point and some Tools and resources, for example, an Implementation advice document and a Slide set weren't posted until November 2007. So not every projected resource may be available tomorrow.

 

This is probably a sign that they felt under pressure to publish quickly. In doing so mistakes can be made. Perhaps some forbearance is appropriate..

 

Dr Charles Shepherd said on the MEA Facebook page in a response to a comment on the announcement of tomorrow’s publication that they are getting ‘quite a lot of media interest already’.

I guess a Friday publication means there can several days of reporting, including the Sunday papers, before it drops out of the main news.

 

Which suggests that a press release did go out today.

 

Facebook



ME Association
If all goes to plan it will be available on [MEA on Facebook] and on the NICE website tomorrow - possibly at 1 second past midnight in the case of the NICE website! Dr CS MEA

 

Hmm, looking forward to the fact it's finally published, but rather dreading the loopholes they have probably put in it. The biggest seems to be the ease with which it will be possible for people's diagnoses to simply be switched to FND, MUS, etc etc. in order that the abuse can continue without anyone raising an issue with the guidelines.

 

A clinician can't just switch a patient's diagnosis on whim - it would have to take place within some sort of process involving the patient and within which informed consent would be foundational. Changing diagnosis would implicitly involve a change in the treatment and care plan that the patient is entitled to. If those running CFS services were to change diagnoses on mass there would be a clear case of malpractice.

I don't doubt that individuals have suffered from surreptitious changes to their records but some kind of mass switching would demand all sorts of answers from those doing the switching.