NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Excellent. Thank you, @Trish and @Andy

 

Moved posts

Think this might be worth noting here especially in relation to what is going on within NICE? ?


'Awareness of the FOI response has got me looking at minutes of Guideline Committee [GC] meetings subsequent to the consultation on the draft.

It takes time to download and find the record of what went on at these. Which can be summed up in a single page - attached.

Key messages:
* the first meeting subsequent to the consultation period took place on March 1st.
at this meeting guideline lead Kate Kelley presented the GC with “an overview of stakeholder comments" - it is unclear whether or not the GC actually get to see the comments, or have to proceed solely on the basis of "an overview” produced by NICE
all other items begin “The committee reviewed and discussed stakeholder comments and recommendations on ….” with the following exception …
… at the meeting of 8th of March, having "reviewed and discussed stakeholder comments and recommendations on CBT”: “The committee amended recommendations on CBT”.

* the issue of “indirectness in GRADE ratings” was discussed on 5th March; there is no record of the decision to seek further papers etc., as revealed in the e-mails shared following FOI; this could mean that it wasn’t a GC decision, but taken by NICE - albeit recording that the GC were informed of this would have been appropriate (assuming that they were made aware).

The most recent meeting for which a minute has been posted on the website is 22nd March. Next meeting was scheduled for 19th April, two and a half weeks ago now.

Hope this is helpful.

PERMISSION TO SHARE

BW, H"

 

https://www.bmj.com/content/371/bmj.m4774/rapid-responses

'.......This equates to 20 million, a deeply disquieting number of people for whom there are ‘no objective diagnostic tests . . . no curative treatment’ and for whom the primary goals of treatment are to give patients techniques for husbanding what little energy they possess. Their lives are limited and drab, and can scarcely be called more than existence......."

......well said!

 

Copied post
They sent a letter to NICE in connection with the guidelines. The text of the Facebook post:

 

Valierie Eliot Smith: Possible responses to the new NICE guideline for “ME/CFS”
https://valerieeliotsmith.com/2021/06/22/possible-responses-to-the-new-nice-guideline-for-me-cfs/

 

"Further to our position statement on the 2021 NICE guideline update, Doctors with M.E. has joined the call for NICE to ensure that unconsulted changes are not injected, as these would avoid scrutiny by the scientific community."

https://doctorswith.me/dwme-joins-call-for-nice-to-maintain-scientific-process/

Translation: A number of ME groups who are stakeholders in the NICE guideline process have sent NICE a letter calling for a further consultation period "to comment on any revisions to the draft guideline that may result [from the additional review of evidence taking place at the moment].". Doctors for ME are one of those groups.

 

What changes between 2 July and 11 July to precipitate this further letter?

 

BTW: The Stakeholder list document was updated on 08 July 2021:

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

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

Stakeholder list updated, 08 July 2021


I don't see Doctors with ME listed as a Stakeholder.

I don't have a copy of the previous Stakeholder list to compare with the 08 July 2021 version for additions to this list.

 

The letter says it is lodged on behalf of the eight stakeholders listed. 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.' is the ninth entry on that list.

 

There's a copy of an older version on archive.org. Comparing the two, the following entries have been deleted:

and these have been added:

 

How can you be added as a stakeholder after the evidence has been assessed and the official draft has been issued?

 

But for arguments sake, what if they were able to bring an effective therapy to the attention of NICE that otherwise they wouldn't consider (for whatever reason)? And if they try to bring ineffective therapies up before NICE, then the evidence assessment 'should' discover the ineffectiveness. I understand, and sympathise with, your argument, but I'm not sure how else it could be done.

 

My understanding is that you can be added as a stakeholder at any point in time, or at the very least I can't recall any restrictions.

 

Thank you, Nightsong.

 

That's one of the things I frankly don't understand here. Most of the organizations have absolutely no stake in this, it doesn't concern them one bit.

But then again there are many things that are beyond understanding in how this is happening...

 

I'm confused. I thought the cut-off date for further stakeholder input to the guideline process, and commenting on the draft, had long passed. I though all that remained was for NICE to consider the feedback on the latest draft that had been received up to that deadline, and no other. I thought this was a key reason put forward as to why the BPS brigade's efforts to unravel that draft would amount to nothing, because anything attempted after that deadline would be inadmissible.

I've not been following this thread all that closely just recently, so I'm presumably missing something.

 

Dr Hng made a submission on behalf of several individuals during the draft guideline consultation period (I infer the same group is what is referred to by 'Dr Hng Group Submission' in this letter). Presumably as a group that doesn't constitute an organisation or charity, they wouldn't have qualified for stakeholdership.

It appears Doctors with ME are attaching to this submission group for the purposes of this letter (presumably due to Dr Hng's involvement in Doctors with ME), and doesn't seem to suggest that Doctors with ME have stakeholdership. Particularly as they aren't currently on NICE's list of stakeholders. Unless they have registered recently.

The Dr Hng group submission was posted to the forum here: https://www.s4me.info/threads/nice-...consultation-december-2020.18352/#post-318561

 

I'm totally confused as well. Is there going to be yet another delay?!

 

Per the email convo between NICE and @InitialConditions, they can only delay the publication once.

We have fingers crossed that there will NOT be a substantial change from the Nov 2020 draft.