UK - NICE guideline on Long Covid

SNOMED International have released Pre-Release "Long Covid" terminology:

https://confluence.ihtsdotools.org/display/snomed/SNOMED+CT+COVID-19+Related+Content

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Pre-Release COVID-19 Related Content

The SNOMED CT COVID-19 related content below will be available in the January 2021 International Edition of SNOMED CT.


Extract from list:

SNOMED CT Identifier:

1119303003

Fully Specified name:

Post-acute COVID-19 (disorder)

Preferred Term:

Post-acute COVID-19

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SNOMED CT Identifier:

1119304009

Fully Specified name:

Chronic post-COVID-19 syndrome (disorder)

Preferred Term:

Chronic post-COVID-19 syndrome


 
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https://confluence.ihtsdotools.org/display/snomed/SNOMED+CT+COVID-19+Related+Content

(...)

The SNOMED CT COVID-19 related content below will be available in the January 2021 International Edition of SNOMED CT.

snomed-long-covid-concepts.png
 
New SNOMED CT Concept terms for inclusion in January 31, 2021 release:

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1119302008 Acute COVID-19
1119303003 Post-acute COVID-19
1119304009 Chronic post-COVID-19 syndrome
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I've asked SNOMED International's Rory Davidson whether the second and third terms above will include definitions in the January 31, 2021 release of SNOMED CT's International Edition as its currently unclear on what basis the two terms would be assigned.


See posts from Post #89 in the dedicated thread:

Post Covid-19 Syndrome naming

https://www.s4me.info/threads/post-covid-19-syndrome-naming.16833/page-5#post-302835


When I've received a response from Rory I'll update the Post Covid-19 Syndrome naming thread above.


From the NICE Final Scope document:

https://www.nice.org.uk/guidance/gid-ng10179/documents/final-scope

1 Case definitions

For the purposes of this guideline, we will be using the terms described below to define the effects of COVID-19 at different time points. As noted above, these definitions will be continuously reviewed as evidence emerges and we begin to understand more about the long-term effects of COVID-19.

Acute COVID-19 infection
Signs and symptoms of COVID-19 for up to 4 weeks.

Ongoing symptomatic COVID-19
Signs and symptoms of COVID-19 from 4 weeks up to 12 weeks


https://www.nursingtimes.net/news/c...mptoms-lasting-more-than-12-weeks-30-10-2020/

Post-Covid-19 syndrome would be defined [in the NICE Rapid Guideline] as “signs and symptoms that develop during or following an infection consistent with Covid-19, continue for more than 12 weeks and are not explained by an alternative diagnosis”
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Having, at the second attempt, managed to register the forum as a stakeholder, I have subsequently received this email.

Dear Colleague,

Thank you for registering as a stakeholder for the NICE, SIGN and RCGP rapid guideline for the ‘management of the long-term effects of COVID-19’.

As a registered stakeholder you will have the opportunity to participate in consultation on the draft guidance which is scheduled for next week. The turnaround for this piece of work is very tight, in order to produce guidance for the system as quickly as possible, given the current context. The draft guideline will be available for comment by 5pm on Wednesday 25th November 2020 and we would need to receive any comments back by 9am on Monday 30th November 2020.

In order to participate in the consultation you will need to complete and return the attached confidentiality agreement. In line with the NICE Interim Manual for guideline development, we are conducting a rapid targeted consultation with all stakeholders that have registered.

We will be unable to share the draft guideline with your organisation until at least one of the registered representatives has returned a signed confidentially agreement, so it’s important that we receive your confidentiality form by COB on Tuesday 24th November to ensure you have the maximum review time. Please note that due to the rapid nature of development, we need to keep to a strict deadline for return of comments and we will not be able to accept late consultation comments received after 9am on Monday 30th November.

We would strongly encourage you to submit comments on the draft guideline; it is a valuable opportunity to ensure that the guideline considers issues important to your members. Please feel free to encourage other organisations to register as stakeholders by contacting this email address [Covid19RapidGuidelines@nice.org.uk] .


As you can appreciate, this makes submitting anything challenging.
 
Latest email from NICE

Dear Stakeholders,

I write further to our previous correspondence regarding the NICE, SIGN and RCGP rapid guideline for the ‘management of the long-term effects of COVID-19’.

Please note that consultation dates have changed slightly – the draft guideline will now be available for comment as soon as possible onThursday 26th November 2020 and the deadline for comments will be Midday on Tuesday 1st December 2020. Apologies for any inconvenience this may cause.

As a registered stakeholder you will have the opportunity to participate in consultation if at least one of your registered representatives has returned a signed confidentiality agreement on behalf of your organisation. If you have not yet returned a confidentiality agreement, please sign and return the attached by COB tomorrow (on Wednesday 25th November 2020), otherwise we will be unable to share the draft documents with you.

Please note that due to the rapid nature of development, we need to keep to a strict deadline for return of comments and we will not be able to accept late consultation comments received after Midday on Tuesday 1st December.

We would strongly encourage you to submit comments on the draft guideline; it is a valuable opportunity to ensure that the guideline considers issues important to your members.
 
NelliePledge said:
Obviously they have their set process. Given some of their stakeholders are long covid patients who will be struggling with the symptoms of the illness they may be failing to fulfil their duty to provide reasonable adjustment by not adapting their consultation process.
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Very effective way of shutting down patient engagement entirely. When it is absolutely critical to achieve even basic competence. In a process that was secretive and completely opaque.

Whether it's the intent or not, the outcome is the same. It really takes dedication to be this out of touch. Although I assume that a rapid development process has multiple steps. Still, this sets it off to a very bad start.
 
I look forward to seeing the document. Maybe a little prevention might not go amiss in this guideline? Or would that be too sensitive a suggestion?

I note in the Guardian a virologist saying:
I do not think Sage will have evidence to show that enhanced mixing is going to be beneficial in terms of stopping the virus from spreading, if anything it will increase the virus spread …The reason that the government and Sage are … giving this amnesty of five days is more of a psychosocial, emotional side of what Christmas means to people.”

Now where did I hear that word before?
 
Andy said:
If you have not yet returned a confidentiality agreement, please sign and return the attached by COB tomorrow (on Wednesday 25th November 2020), otherwise we will be unable to share the draft documents with you.
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Have we managed to do this by the deadline? I presume close of business is passed now?
 
We have received the draft guideline. However, as you can see from emails from NICE above, this is on the basis of us keeping it confidential. So we won't be able to post it or discuss it on the forum, but a small group will work on it in private. We would obviously prefer to work more openly, as we are with the ME/CFS guideline, but our hands are tied.
 
rvallee said:
Well this is about as expected as it's grotesque. Who are these doctors? What is going on at these clinics? What material do they use while the guidance isn't finished?
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It's not clear from the tweet which country the tweeter attended a clinic in, so may not be relevant to the NICE process if not in the UK.

But I agree, that response in a clinic doesn't sound good.
 
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