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

IAPT leads are still hoping to obtain creation of a new Concept code for Somatic symptom disorder (SSD) for addition to the UK Edition of SNOMED CT.

The status of this request is that the request was not approved for the April release, as IAPT had hoped; instead it was referred on to SNOMED International in March, following my submission of stakeholder feedback opposing the addition of SSD to any edition of SNOMED CT.

NHS Digital confirmed to me that the April 2020 release of the UK Edition would not contain a new Concept code for SSD and that the request had been referred on to SNOMED International, as it was considered that it required further discussion.

IAPT then revised a spreadsheet [1] in which they stated that they expected a new SNOMED CT code for SSD to be available in the October 2020 release. That release was delayed until November 11. No new code was added to the November release, either. There is another interim release of the UK Edition scheduled for December 02.

The request appears to remain under review with SNOMED International.

The options are:

it could be approved for addition to the International Edition (in which case, it would be absorbed by all the national editions);
it could be approved for addition to the UK Edition only;
it could be rejected for both the International and the UK Edition;
no decision could be made and the request would be left hanging.

If approved, the SSD term will be used in the new IAPT Data Set v2.0 and associated literature to replace the legacy Data Set v1.5 term

"MUS - not otherwise specified" (which IAPT considers is no longer an appropriate term for the cohort).

The new IAPT Data Set v2.0 was implemented on 01 September, but with the request for SSD pending a decision.


Key links:

1 IAPT Data Set v2.0 information page: https://digital.nhs.uk/data-and-inf...to-the-iapt-data-set-v2.0---from-1-april-2020

Updated Technical Output Specification, Data Model, System Conformance Checklist and SNOMED mapping documents:

2 Spreadsheet: IAPT v2.0 Terminology Mapping Guidance Current version: 3.3 Last updated: 17 July 2020

3 Screenshot from spreadsheet Version 3.3: https://dxrevisionwatch.files.wordpress.com/2020/07/revised-iapt-3.3-mapping-ssd-for-october.png

4 November 13, 2019 request for addition of SSD to SNOMED CT: https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=29847

---------------------

Note: I'll be retired by the end of this coming week, so someone else will need to monitor this request, its outcome, and any revisions to the Data Set v2.0 spreadsheets and associated documentation that relate to this request.

 

Can anyone help me reply to this question I received:

I know that the attached survey was submitted but not sure where to find it referenced in the documentation.

 

This may be the link:
https://www.meaction.net/2020/04/30/thousands-add-messages-to-6-m-long-card/

As NICE continued to refuse to add a warning re GET to the current Guidelines, MEAction UK asked for PwME to send in their experience of the harms of GET or to sign in support of adding a warning. These were gathered on to a long roll, then folded into a card and couriered to NICE. An electronic version was also sent.

In addition I believe that accounts of harm to youngsters was discussed by reps from a parent FB group with the GDL chair, Dr Peter Barry, paediatrician at the Scoping meeting in May 2018.

@Tom Kindlon

 

Thanks, I'll pass that on.
But my guess is the person wanted to see where it is referenced in the NICE documentation though perhaps the minutes of that scoping meeting does mention something.

 

In the appendices, it's mentioned there:

https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7, p.210

It's the Oxford Brookes survey, referenced as "Forward ME survey 2019" in the table and as "Oxford Clinical Allied Technology and Trials Services Unit. Forward-ME Group CBT & 44GET Survey. 2019" in the list of references at the end of the document.

Perhaps that helps when searching for references in the main documents?

(Edit: Hope I didn't confuse the surveys. The lead author of the Brookes survey I think was "Helen Dawes" if that helps.)

 

Thanks. I had also wondered whether it was a commissioned survey and so thought it might be more prominent but it looks like it didn’t have that status.

 

A reminder to anyone interested in adding comments to the individual discussion threads about each section of the guideline - the threads will be closed this Friday (27th November). After that you will have to wait until the draft submission is ready a couple of weeks later to have your final say. For details, see this announcement.
https://www.s4me.info/threads/nice-draft-guideline-submission.17855/

Apologies - this section was omitted when the threads were created:
Context pages 71-2
https://www.s4me.info/threads/nice-me-cfs-guideline-draft-context-pages-71-2.17951/

 

A huge thank you for all the work that you are all doing. I don't know how I'd cope without S4ME.

 

I just wanted to apologise that I’ve not managed to contribute more to this process and to thank everyone who is working so hard on it – especially the committee. It is very reassuring to know that such competent and knowledgeable people are putting this together.

Also a reminder that anyone can give feedback to:

1) AfME by completing this survey: https://www.actionforme.org.uk/news/draft-nice-guideline-for-me-have-your-say/

2) MEA by emailing: feedback@meassociation.org.uk

3) MEAction by emailing uk@meaction.net

I’ve submitted similar brief comments to all 3 (including saying that I agree with the points in Michiel’s blog). My feeling is that the more people that give feedback, the more likely they are to raise the concerns we have, and the stronger their case will be to NICE.

I’m not sure when the deadlines are for the above – if anyone knows, please share.

 

I came here to say just exactly this
I'd hoped to get a bit further but am sliding down the wall. Huge thanks to everyone involved.

 

I'd like to echo the thanks and this:

Many many thanks to everyone involved. Also again thanks to the forum members on the guidelines committee.

Your work is much appreciated.

Special thanks to those who worked on the "running summaries". I only managed to read a few, but they made it possible for me to post some erratic comments.

 

Just want to add, that for very seriously affected people, this will not be possible, and they will need someone to do it for them.

 

Thank you to everyone who has contributed to the discussion on S4ME's reply. I look forward to reading as soon as I am able.

Apologies for my lack of input. This period has coincided with a severe crash including this week 3 days of medical visits, two at major hospitals for other conditions. Frightening and provoking much worse symptoms. Tests still not completed. The experience has Demonstrated again the lack of understanding of ME that is widespread in medicine- sitting upright in an eye unit for 5 hours, and being examined with strong lights into the eye for extended periods - but surely I could have lain down between examinations? We asked but were given blank looks- no energy left to fight.

 

Thanks to everyone who participated in the discussion threads on the NICE Guideline draft for your thoughtful comments. We will be closing those threads now.

A small team is working on the draft which will be shared with you for final comment before it is submitted on 22 December.

 

Was just looking at the thread on 'recommendations for research' and was surprised people weren't more critical. To me, that seemed like the worst section and something that was likely to lead on to future problems. Who do we think would be doing that research? To me, that looked likely to be a disaster zone.