Post Covid-19 Syndrome naming

Dx Revision Watch said:
(My highlighting in brown)

https://wellcomeopenresearch.org/articles/5-224

PDF: https://d212y8ha88k086.cloudfront.n...7e6-198188dab8b3_16307_-_felicity_callard.pdf

OPEN LETTER
Why the Patient-Made Term 'Long Covid' is needed

[version 1; peer review: awaiting peer review]

Elisa Perego1, Felicity Callard
https://orcid.org/0000-0002-5350-1963
2, Laurie Stras
https://orcid.org/0000-0002-0129-2047
3, Barbara Melville-Jóhannesson4, Rachel Pope5, Nisreen A. Alwan
https://orcid.org/0000-0002-4134-8463 6-8


Abstract
The patient-made term ‘Long Covid’ is, we argue, a helpful and capacious term that is needed to address key medical, epidemiological and socio-political challenges posed by diverse symptoms persisting beyond four weeks after symptom onset suggestive of coronavirus disease 2019 (COVID-19). An international movement of patients (which includes all six authors) brought the persistence and heterogeneity of long-term symptoms to widespread visibility. The same grassroots movement introduced the term ‘Long Covid’ (and the cognate term ‘long-haulers’) to intervene in relation to widespread assumptions about disease severity and duration. Persistent symptoms following severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection are now one of the most pressing clinical and public health phenomena to address: their cause(s) is/are unknown, their effects can be debilitating, and the percentage of patients affected is unclear, though likely significant. The term ‘Long Covid’ is now used in scientific literature, the media, and in interactions with the WHO. Uncertainty regarding its value and meaning, however, remains. In this Open Letter, we explain the advantages of the term ‘Long Covid’ and bring clarity to some pressing issues of use and definition. We also point to the importance of centring patient experience and expertise in relation to ‘Long Covid’ research, as well as the provision of care and rehabilitation.
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I am in agreement with much of this, medicine has passed the opportunity to give it a name by completely missing the boat and has not exactly fared well on the naming department regarding chronic illness, but the separation with other pathogens is completely arbitrary and wrong. It would be like arguing to separate liver cancer from blood cancer because one is solid and the other fluid. True. Irrelevant.

I know who the authors are and understand that they badly want to avoid being stuck in the ME/CFS black hole (so much for that "fashionable illness label" BS people still use to this day) but that's not how things work. The other types of harm caused by COVID are well-known and understood, have their own knowledge base and expertise already. There is already expertise on blood clots, heart damage, pneumonia and the rest. It's the distinct part of chronic post-infectious symptoms that is particular here, the part that remains when you remove all other factors. The part that disables people who had little to no initial symptoms and appear all clear on clinical investigations.

Really the point has to be emphasized here. For decades this absurd trope of "fashionable illness labels" has been used endlessly to mock and malign us. It has been repeated ad nauseam despite having no basis in reality. Here we have the clearest example that all of those arguments were complete and total BS, that people badly do not want a highly discriminated disease that is subject to scorn and mockery. The fact that people who argue this point continue to have influence on our care is beyond absurd. Yet they will keep repeating that point, even as it is so loudly and clearly debunked. Because they don't mean what they say and don't say what they mean.

A reminder of how this point was argued in the past, which is the exact same way it is argued today. Contrast this with efforts such as this to clearly separate away from ME/CFS, because the authors know it is a death sentence. Screw you Wessely, you suck at this.

wessely-me-fake-illness-6.jpg
 
A third request for addition of a new Concept term for SNOMED CT UK Edition has been submitted, today, via NHS Digital Submission Portal:


Submitted via: NHS Digital SNOMED CT UK Edition Submission Portal

Submitted: 25/09/20

Submitter: Not specified

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

Request 3: 'Suspected long Covid' and 'Long Covid'
under Parent Identifier: 1240751

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=33004

Request 33004

Type
Add concept

Status
Submitted

Hierarchy
Clinical finding

Parent identifier
1240751

Suggested name, term or description
Long Covid

Priority
Urgent

Brief summary of the request
It would be helpful to have codes to recognise longer term effects of Covid-19. 'Suspected long Covid' and 'long Covid' would enable us to record.

Description of the addition or change
We are recognising long term sequelae of Covid-19 infection. Some patients had swab proven Covid-19, others suspected but not lab proven Covid-19. It would help us to audit those people with ongoing symptoms.

Request update

Source of authority

Provisional concept term

SNOMED International request reference number

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


Earlier requests:


1 Request No: 32731

Requests addition of Concept code for: 'Post COVID-19 syndrome (please double check with clinical bodies)'
under Parent identifier 1240751000000100

Submitter: Not specified

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731


2 Request No: 32886:

Requests addition of Concept code for: 'Post-COVID syndrome'

Submitter: Not specified

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32886

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

This means the following Concept terms have now been requested:

1 'Post COVID-19 syndrome' (please double check with clinical bodies)
2 'Post-COVID syndrome'
3 'Long Covid' and 'Suspected long Covid'
 
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Sorry if this is a noddy level question @Dx Revision Watch but I’m confused by multiple requests being submitted.

Is this simply because of a lack of coordination within the NHS - different organisations submitting requests without checking if others are already addressing the issue.

Or is it multiple attempts by one organisation under different nuances of naming hoping that one proposal will be more acceptable than others.
 
https://wellcomeopenresearch.org/articles/5-224


Apologies for not copying the text I’m referring to.
Under The subheading The perils of pandemic medicine, in the final paragraph of this section the authors state
- i paraphrase - that they argue for not being subsumed into other illness categories.
But while they are stating a position I’m not seeing where they have set out an argument for the position in this letter. Am I missing something?
 
NelliePledge said:
Sorry if this is a noddy level question @Dx Revision Watch but I’m confused by multiple requests being submitted.

Is this simply because of a lack of coordination within the NHS - different organisations submitting requests without checking if others are already addressing the issue.

Or is it multiple attempts by one organisation under different nuances of naming hoping that one proposal will be more acceptable than others.
Click to expand...


In order to access the NHS Digital SNOMED CT Submission Portal to track the details and progress of requests, an account needs to be registered. Registered users would normally be personnel within the NHS or who work for providers of services to the NHS. If you don't fit these categories, it is possible to communicate directly with NHS Digital's terminology and classifications leads and they will submit a request on your behalf - this applies to requests for consideration of additions/changes the UK Edition of SNOMED CT and for consideration of additions/changes to the International Edition.

Because I am not an NHS employee and don't have a registration for the portal pages, I have dealt directly with NHS Digital and SNOMED International's terminology leads in relation to submitting requests in respect of changes for CFS, ME and submitting comment, as a stakeholder, in response to requests submitted by other parties for addition of Concept terms for SSD and SEID; and they kept me informed of the progress of these requests, as I cannot track their progress, myself.

All I can see is the publicly visible Request Search engine, which is here: https://isd.hscic.gov.uk/rsp-snomed/user/guest/home.jsf

Although I can search for requests by key words or by date etc. the results don't display the names of the submitters of requests or the NHS Trusts (or other bodies) they work for, but I would imagine these are visible to those registered for access to the submission portal pages.

Before submitting a request and a brief rationale in support of that request, requesters are asked to check that the Concept term does not already exist in the most recent releases of the International Edition or the UK Edition.


The first request says:

"Post COVID-19 syndrome (please double check with clinical bodies)

(...) We would like to request concept(s) related to post COVID-19 syndrome or whatever the clinical community decide to call.

"My trust is the London COVID-19 centre and my respiratory consultants have expressed their view that currently there is a lack of post COVID-19 related concepts. These patients who either had COVID-19 (through confirmed PCR test) or a high suspicion of COVID-19. Nearly six months down the line, they started developing what they call “post COVID-19 syndrome”. Right now, we have been recording this using a list of the symptom concepts. You might want to work with the clinical bodies to author such concept request."


This suggest to me that it has been submitted by a clinical coder or other NHS admin. It acknowledges that the SNOMED CT terminology parent Concept is "COVID-19" - not "COVID" (as the second requester uses). It also suggests consultation with clinical bodies over terminology.


The second request has been submitted by someone who had evidently submitted, initially, via email, and was probably invited to register an account and re-submit their request via the portal in order that they can track its progress. It says:

"Description of the addition or change
Adding here to track the request via email for post-COVID syndrome"


There is no rationale included - but that may have been included in the email. It's unclear who has submitted this request but they haven't acknowledged that all existing COVID-19 related Concept terms in SNOMED CT UK Edition, the International Edition and the WHO's ICD-10 and ICD-11 use the term, "Coronavirus disease 19" or "COVID-19" - not "COVID" or "Covid", as they have suggested. I think this is likely to have been submitted by someone unconnected with the first request.


The third request says:

"It would be helpful to have codes to recognise longer term effects of Covid-19. 'Suspected long Covid' and 'long Covid' would enable us to record.

Description of the addition or change
We are recognising long term sequelae of Covid-19 infection. Some patients had swab proven Covid-19, others suspected but not lab proven Covid-19. It would help us to audit those people with ongoing symptoms."


I suspect the third request has been submitted by someone unconnected with the first and second requesters but who also works in a clinical coding department or is an auditing admin. My first thought was that this third request might have been submitted by one of the authors of the Letter to Wellcome Open Research, but from the wording, I think it more likely it has been submitted by someone who works in coding/auditing.


The first request is marked as "In Progress" for its status - which I assume means it is in the process of consideration. The other two are still marked as "Submitted".
 
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NelliePledge said:
https://wellcomeopenresearch.org/articles/5-224


Apologies for not copying the text I’m referring to.
Under The subheading The perils of pandemic medicine, in the final paragraph of this section the authors state
- i paraphrase - that they argue for not being subsumed into other illness categories.
But while they are stating a position I’m not seeing where they have set out an argument for the position in this letter. Am I missing something?
Click to expand...


Do you mean this section:

The perils of pandemic medicine
‘Long Covid’, with its aetiological openness, recognizes the risks inherent to emergency medicine. These include: speculative therapies; inadequate care risking persistent/permanent damage; over-hasty diagnosis and diagnostic lumping – particularly in the context of trauma in clinicians and patients; lack of access to testing and diagnostic tools; and stigma. When in-depth testing evaluating biological markers is not available, or when such tests do not explain symptoms or the exact duration of viral persistence, the risk of misdiagnosis remains high.

‘Long Covid’ acknowledges the potential for persistent illness to be caught up in political and medical misunderstandings and exploitation. The definition and treatment of complex phenomena (‘Long Covid’) that emerge in relation to an equally complex, currently not well understood disease (COVID-19), itself of contingent definition, are full of danger. We do not currently know whether all ‘Long Covid’ patients are indeed ‘post-viral’.

Anthony Fauci has stated that a COVID-19 ‘post-viral syndrome’ is ‘strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome’61. While we acknowledge the importance of investigating comparisons with other diagnostic entities, we argue however against enfolding ‘Long Covid’ within other diagnoses. We need a label distinct from other phenomena related to earlier viral and other exposures (e.g. ME/CFS). We also question the term ‘Post-Covid Syndrome’: we believe it carries not only risks of misdiagnoses and mismanagement, but also of leaving those with persistent illness behind, especially in a post-vaccine world.


Perego E, Callard F, Stras L et al. Why the Patient-Made Term 'Long Covid' is needed [version 1; peer review: awaiting peer review]. Wellcome Open Res 2020, 5:224 (https://doi.org/10.12688/wellcomeopenres.16307.1)First published: 24 Sep 2020, 5:224 (https://doi.org/10.12688/wellcomeopenres.16307.1)Latest published: 24 Sep 2020, 5:224 (https://doi.org/10.12688/wellcomeopenres.16307.1)
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It will be interesting to see whether the peer reviewers also pick up on that.
 
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NelliePledge said:
Sorry if this is a noddy level question @Dx Revision Watch but I’m confused by multiple requests being submitted.

Is this simply because of a lack of coordination within the NHS - different organisations submitting requests without checking if others are already addressing the issue.

Or is it multiple attempts by one organisation under different nuances of naming hoping that one proposal will be more acceptable than others.
Click to expand...


PS: as I've mentioned in an earlier post: in response to the first request that was submitted in August, which suggested consultation with clinical bodies over terminology, NHS Digital's terminology leads may consider that this request should be referred on to the SNOMED International leads and that a standardised Concept term needs to be developed that can be added to the International Edition and absorbed by all the national extensions.

SNOMED International may want to collaborate with the WHO, as well, for global standardisation for data collection and for code mapping to ICD (rather than creating a new Concept code for specific use in the UK Edition by NHS England). There may already be one or more requests submitted for a comparable Concept term for the International Edition, but again, I don't have access to their submission platform.
 
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Don't you need some sort of diagnostic criteria before you can indulge in classification?

If they are not careful they will end up with the problems we faced post Oxford criteria.

They had Covid, perhaps. Now they have a variety of symptoms.

Lumping no doubt makes a diagnostician's life simpler. Has it ever helped a patient?
 
chrisb said:
Don't you need some sort of diagnostic criteria before you can indulge in classification?
Click to expand...


Ideally, yes. But in the meantime, these patients cannot easily be accounted for in electronic medical records, data collection, auditing etc. as GPs are recording using symptom Concepts in SNOMED CT, as there is no other suitable Concept code.
 
I've suggested to Dr Lennane that possibly an emergency Concept code might be obtainable at least for the SNOMED CT UK Edition, while consensus is being reached between NHS Digital, SNOMED CT, WHO, clinical bodies, advocacy groups and other stakeholders on definitions, terminology etc for global standardisation.
 
If anyone is interested to see the considerable number of SNOMED CT Concept codes that have been authored for COVID-19 and related terms since 31st January 2020, for NHS use, including emergency codes and terms already retired:


https://www.emisnow.com/csm?id=kb_article_view&sys_kb_id=8046a89e1b0cd090acae2f06bd4bcbdf

Clinical SNOMED CT coding information in relation to COVID-19
Revised by Michael Sheary • 11d ago

This document is to outline the clinical coding content available to EMIS clinical systems relating to COVID-19.
 
In situations where there is no definitive ICD-10 or OPCS-4 code(s), clinical coders, NHS bodies, academic institutes and non-coding professionals can submit queries to NHS Digital for advice.

The Query Resolution Database is publicly searchable and gives access to resolutions provided in response to customer queries.

Between March and July, a significant number of queries were submitted in relation to COVID-19 and ICD-10 coding and emergency coding, including a query (Query UID 13409 resolved on July 22, 2020) requesting advice on emergency coding of 'Post covid-19 syndrome'.*


NHS Digital: Query Resolution Database

Query UID 13409

Date of resolution: 22 July 2020

re coding a diagnosis of post COVID-19 syndrome in ICD-10 5th Edition


Screenshot URL: https://dxrevisionwatch.files.wordpress.com/2020/10/query-22-july-2020.png



UID 13409:

Key Term
Post covid-19 syndrome

UID
13409

Date of resolution 22 Jul 2020
Date added to database 28 Jul 2020

Query type
  • ICD-10 5th Edition
Query details
Please could you advise how we should code a diagnosis of ‘post covid-19 syndrome’?

We are seeing this increasingly documented in casenotes. Should we be coding this to the symptoms presenting with, which is typically fatique, lingering cough etc, followed by a history of infectious disease code? Or as a sequelae? Or as still having covid-19 i.e to U07.1?

We are concerned coding either of the first options will not allow for accurate analysis of covid-19 patients as the history/sequalae code could be used for other infectious diseases, however using U07.1 doesn’t seem right either as they no longer have an active infection.

[Ed: My highlighting in brown]

Resolution
Please accept our apologies for the delay in responding to your query. We can confirm that we are in discussions with the World Health Organisation regarding the coding of post COVID-19 conditions, but we are yet to receive further information about the outcome of these discussions.

Therefore, in the absence of a dedicated code to describe a post COVID-19 condition, we recommend you clarify with the responsible consultant whether the symptoms described as post COVID-19 syndrome can be considered a late effect of COVID-19. If the responsible consultant confirms this, it would be appropriate to assign B94.8 Sequelae of other specified infectious and parasitic diseases in addition to the codes for the symptoms as per DGCS.8: Sequelae or late effects.

If the responsible consultant is unable to confirm the symptoms are a late effect of COVID-19, we recommend the codes for the symptoms are assigned and COVID-19 is captured as a personal history by assigning Z86.1 Personal history of infectious and parasitic diseases.
​

*Edited to insert intro text
 
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The WHO has released further Emergency Use codes for classifying consequences of COVID-19 for ICD-10. These are not yet added to the browsers for ICD-10 but information can be found on the WHO site here:

https://www.who.int/classifications/icd/covid19/en/

Post-COVID-19 Codes
zip, 819kb

update-3-in-relation-to-covid-19.png




Equivalents to these ICD-10 codes have been added to the September 2020 release of the Blue ICD-11 MMS online browser:

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/2024855916

RA02 Post COVID-19 condition

Coding Note
This optional code serves to allow the establishment of a link with COVID-19. This code is not to be used in cases tested positive at some point in time that did not present any illness.

Screenshot URL: https://dxrevisionwatch.files.wordpress.com/2020/09/post-covid-19-condition1.png


https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/1195031154

RA03 Multisystem inflammatory syndrome associated with COVID-19

Exclusions


https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/1268185587

QC42 Personal history of infectious or parasitic diseases

Matching Terms
Personal history of COVID-19, NOS*
Personal history of COVID-19, virus identified
Personal history of COVID-19, virus not identified

Postcoordination+
Postcoordination is available:click here to open the browser
 
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Yet again, THANK YOU @Dx Revision Watch , for watching out for all these updates, and keeping an eye out for us all.

As I have said before, the whole ICD-10, ICD-11, WHO, NHS, SNOMED info is so overwhelmingly complicated for those of us with “very little brain” (available at any given time). Once upon a time, I am sure it is the sort of logical administrative puzzle that I would have loved to get my teeth into!

So.....:emoji_bouquet: :emoji_bouquet: :emoji_bouquet:


ETA Added “SNOMED” as another of those terms.....
 
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