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Updates on status of ICD-11 and changes to other classification and terminology systems

Discussion in 'General ME/CFS News' started by Dx Revision Watch, May 4, 2018.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Next release of Canadian Edition due October 30;
    Swedish Edition on November 31;
    Uruguay Edition on December 15;
    Australian Edition on December 30.

    If your country is a member of SNOMED International but does not have a public browser hosted on the International Edition platform or on its own platform, please refer to your country's SNOMED CT National Release Centre website for the twice yearly release schedule.
     
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  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    SNOMED CT UK Edition release 20181001

    The October 01 release of the SNOMED CT UK Edition is now available from the NHS Digital public version of the SNOMED CT browser.

    This UK release incorporates the addition of the parent "Disorder of nervous system" for CFS and terms under Synonyms, as approved and implemented for the July 2018 release of SNOMED CT International Edition.

    SCTID: 52702003 Chronic fatigue syndrome (disorder) is now classified under supertype SCTID: 118940003 Disorder of nervous system (disorder).

    Concept: SCTID: 52702003: Chronic fatigue syndrome (disorder) was already mapped in the SNOMED CT to ICD-10 cross map to G93.3 Postviral fatigue syndrome. This change of parent Concept or supertype consolidates that existing relationship.


    SNOMED CT UK Edition release 20181001

    https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104


    [​IMG]


    A copy of my full statement on the addition of the Disorder of nervous system parent for CFS and its Synonyms terms can be downloaded here:

    PDF: Statement on SNOMED CT and Chronic fatigue syndrome August 2018:

    https://dxrevisionwatch.files.wordp...snomed-ct-and-chronic-fatigue-syndrome-v1.pdf

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

    Edited to insert:
    The October release of the Canadian Edition has been now been posted


    SNOMED CT Canadian Edition release 20181030

    http://browser.ihtsdotools.org/?per...omed&langRefset=19491000087109,20581000087109
    [​IMG]

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

    Edited to insert:
    The November release of the Swedish Edition has been now been posted


    SNOMED CT Swedish Edition release 20181130

    https://browser.ihtsdotools.org/?pe...g/api-exten/snomed/&langRefset=46011000052107

    [​IMG]


    Note: the Swedish Edition includes a separately coded for Concept term:

    SCTID: 55941000052101 | kronisk trötthet | [Chronic fatigue (finding)].

    This is marked with the Swedish flag symbol to denote that this SNOMED CT Concept term is exclusive to the Swedish Edition. It can be viewed here:

    https://browser.ihtsdotools.org/?perspective=full&conceptId1=55941000052101&edition=se-edition&release=v20181130&server=https://browser.ihtsdotools.org/api-exten/snomed/&langRefset=46011000052107

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

    The November 30 release of SNOMED CT Argentinian Edition is also published:
    SCTID: 52702003 síndrome de fatiga crónica (trastorno):

    https://browser.ihtsdotools.org/?pe...ls.org/api-exten/snomed/&langRefset=450828004


    Incorporation into other national editions

    The next release of the Uruguay Edition is scheduled for December 15.

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

    Edited to insert:
    The January 31, 2019 release of the Australian Edition has been now been posted:


    https://browser.ihtsdotools.org/?pe....org/api/snomed/&langRefset=32570271000036106

    [​IMG]


    If your country is a member of SNOMED International but does not have a publicly accessible browser hosted on the International Edition platform or hosted on its own platform, please refer to your country’s SNOMED CT National Release Centre website for the release schedule.
     
    Last edited: Feb 5, 2019
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  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Re: a request that "neurasthenie" is removed from the list of Synonyms terms in the Netherlands Edition of SNOMED CT.

    (Pim Volkert is Terminology Co-ordinator, Nictiz, and the lead for the Netherlands SNOMED CT National Release Centre.)





    Translation:

    "Bedankt voor de inhoudelijke feedback. We hebben het uitgezocht. Het blijkt dat wij de verwijdering niet van onze Nederlandse bron door hadden gekregen. We hebben het nu gecorrigeerd. In de volgende release (maart 2019) zal het te zien zijn."

    "Thank you for the substantive feedback. We've sorted it out. It turns out that we had not received the removal from our Dutch source. We have now corrected it. It will be shown in the next release (March 2019)."


    With thanks to @mecvsnieuws for taking this up with Pim Volkert and for achieving a prompt and successful outcome.
     
    Last edited: Oct 3, 2018
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  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  5. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Tomorrow I retire from advocacy, after 16 years mired in the cesspit that is ME politics.

    As previously mentioned, I am providing a list of 10 key "legacy" reports and documents from my website on the current status of ICD-11 and SNOMED CT.

    There is an additional post to add which I did not have time to compile this week. I will edit this in when it's been published on my site, next week.

    Once I have stepped back, it's not my intention to continue to contribute to forums, Twitter or other platforms on any issues. But I shall be keeping an eye on the orange ICD-11 Maintenance platform in case there are any developments with my unprocessed proposals, with the Dr Tarun Dua proposal of November 6, 2017, or with any potential new proposals from the ICD-11 MSAC or CSAC committees that may require my attention.


    Key legacy posts and documents from Dx Revision Watch:


    1 Document: Comparison of Classification and Terminology Systems, July 30, 2018 (jointly with Mary Dimmock)

    https://dxrevisionwatch.com/2018/07/30/comparison-of-classification-and-terminology-systems/

    2 Document: Comparison of SSD, BDD, BDS, BSS in classification systems, July 21, 2018 (jointly with Mary Dimmock)
    https://dxrevisionwatch.com/2018/07/21/comparison-of-ssd-bdd-bds-bss-in-classification-systems/

    3 World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11), July 25, 2018

    https://dxrevisionwatch.com/2018/07...ernational-classification-of-diseases-icd-11/

    4 Update on SNOMED CT and Bodily distress disorder, August 1, 2018
    https://dxrevisionwatch.com/2018/08/01/update-on-snomed-ct-and-bodily-distress-disorder/

    5 Chronic fatigue syndrome classified under Neurological disorder in SNOMED CT International Edition, August 1, 2018
    https://dxrevisionwatch.com/2018/08...-disorder-in-snomed-ct-international-edition/

    6 Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part One, August 17, 2018
    https://dxrevisionwatch.com/2018/08...ation-of-pvfs-me-and-cfs-for-icd-11-part-one/

    7 Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two, August 17, 2018
    https://dxrevisionwatch.com/2018/08...ation-of-pvfs-me-and-cfs-for-icd-11-part-two/

    8 PDF: Proposal and Rationale: Revision of G93.3 legacy terms for ICD-11, Dimmock & Chapman, March 27, 2017
    PDF: Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018


    9 Update to addition of Disorder of nervous system parent for Chronic fatigue syndrome and terms under Synonyms in SNOMED CT, October 5, 2018
    https://dxrevisionwatch.com/2018/10...ndrome-and-terms-under-synonyms-in-snomed-ct/

    10 Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Three: WHO rejects Dr Dua’s proposal, November 22, 2018
    https://dxrevisionwatch.com/2018/11...d-11-part-three-who-rejects-dr-duas-proposal/
     
    Last edited: Nov 23, 2018
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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    Much thanks to you for all your work over the years @Dx Revision Watch. All this ICD bureaucracy stuff makes my head spin - I have no idea how you keep up with it all. You'll be sadly missed for your many contributions.
     
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  7. Nellie

    Nellie Senior Member (Voting Rights)

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  8. Inara

    Inara Senior Member (Voting Rights)

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    Best wishes for your future and a very good time, Suzy!
     
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  9. Sarah

    Sarah Senior Member (Voting Rights)

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    I echo everything @Esther12 has said. Thank you doesn't cover it, but nonetheless a sincere thank you for all your years of advocacy work, @Dx Revision Watch. I really wish you and your family all the very best.
     
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  10. Dechi

    Dechi Senior Member (Voting Rights)

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    You have done tremendous work. Thank you for your time and dedication. I wish you the best.
     
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  11. Joh

    Joh Senior Member (Voting Rights)

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    Thank you so, so much for your important advocacy work! :emoji_bouquet: You will be missed. I wish you and your family the best.
     
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  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thank you for your resolute determination and work. You will be sorely missed. It takes a particular type of thought process to stay on top of the myriad of changes and their impact, sadly mine is too tangential for duch a process.

    I hope you have lots of things to look forward to do ( i can' t imagine the amount of time that must have been involved ). Enjoy !
     
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  13. Trish

    Trish Committee Member

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    Thank you for all your hard work, @DxRevisionWatch. It is very much appreciated. I wish you and yours all the best for the future.
     
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  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I shall not be available to comment further on this new paper as I am now retired, but a copy needs to be in this thread.

    Note that the ICD-11 PHC has not yet been released by WHO and WHO has published no date for its projected finalization and release.

    In April this year, WHO was asked to confirm the current development timeline for the ICD-11 PHC via a formal request to their information office, but failed to provide me with this information. Dr Geoffrey Reed had also been asked to provide clarity around the finalization and release targets for the ICD-11 PHC and whether any public review and comment exercise has been considered. My understanding is that Forward-ME did not receive a response, either. I am no longer in a position to confirm whether Forward-ME had followed up on this.

    It remains unclear whether the ICD-11 PHC cannot be finalized and released until after the core ICD-11 MMS has been approved by the World Health Assembly. (ICD-11 core version is currently scheduled for presentation for approval in May 2019, with WHA's approval, if obtained, coming into effect on January 01, 2022.) It also remains unclear whether any additional field trials or evaluation of existing field trials for proposed new categories for the ICD-11 PHC are being planned or are in progress.

    Note also, that although the paper refers to the DSM-5's Somatic symptom disorder (SSD), it makes no mention of, or comparison with, Bodily distress disorder (BDD), the divergent SSD-like construct that has already been included in the core ICD-11, as released on June 18, 2018.


    Html: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-44462018005007108
    PDF: http://www.scielo.br/pdf/rbp/2018nahead/1516-4446-rbp-1516444620180003.pdf

    (PDF attached to post)

    Studying ICD-11 Primary Health Care bodily stress syndrome in Brazil: do many functional disorders represent just one syndrome?.
    Brazilian Journal of Psychiatry, Epub October 11, 2018.https://dx.doi.org/10.1590/1516-4446-2018-0003

    Fortes, Sandra, Ziebold, Carolina, Reed, Geoffrey M., Robles-Garcia, Rebeca, Campos, Monica R., Reisdorfer, Emilene, Prado, Ricardo, Goldberg, David, Gask, Linda, & Mari, Jair J.. (2018).

    Edited to add submission history: Received: October 7, 2017; Accepted: January 29, 2018
     

    Attached Files:

    Last edited: Oct 24, 2018
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Important update regarding proposals for ICD-11

    As reported earlier in the thread, there have been three proposals for PVFS, BME and CFS waiting to be reviewed and processed:


    The proposal submitted by Dimmock & Chapman (submitted on March 26, 2017)

    The proposal submitted by Dr Lily Chu on behalf of the IACFS/ME (submitted on March 31, 2017)

    The proposal submitted by Dr Tarun Dua (submitted on November 06, 2017)

    ( For my August 2018 report see: Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two)


    Dr Tarun Dua's proposal:


    Dr Tarun Dua is Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse.

    Dr Dua's proposal, which she has stated was submitted on behalf of the now sunsetted Topic Advisory Group for Neurology, had recommended moving “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] from the Diseases of the nervous system chapter to the Symptoms, signs chapter, as a child under Symptoms, signs or clinical findings of the musculoskeletal system.

    If you are not registered with the ICD-11 Proposal platform, you can access Dr Dua's proposal at the end of this PDF: https://dxrevisionwatch.files.wordpress.com/2018/08/dua1.pdf

    You can read the response to Dr Dua's proposal by Dimmock and Chapman here: Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018


    Important update regarding Dr Dua's proposal for ICD-11

    Yesterday, November 19, Dr Dua's proposal was marked as Rejected by the ICD-11 Proposal Mechanism admins:

    Screenshot: Accessed November 20, 2018:

    https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/569175314

    [​IMG]
    ---------------------------------------------

    The decision to Reject Dr Dua's proposal that the terms should be relocated under the Symptoms, signs chapter is accompanied by this Comment from the ICD-11 Proposal Platform admins "Team3 WHO":

    https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef

    In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research.

    Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time.

    Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter.

    The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision.

    Team3 WHO 2018-Nov-19 - 07:10 UTC


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

    If you are not registered with the ICD-11 Proposal platform, you can access a full copy of Dr Dua's proposal and rationale at the end of this PDF: https://dxrevisionwatch.files.wordpress.com/2018/08/dua1.pdf

    You can read the response to Dr Dua's proposal by Dimmock and Chapman here: Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018

    The proposal submitted by Dimmock and Chapman on March 27, 2017 can be read here: Proposal: Revision of G93.3 legacy terms for ICD-11

    You can read quotes from the WHO's position on potential relocations, here:

    Extract from Response to Dr Dua Proposal of November 6 2017: 4. Compliance with WHO standards and other considerations on relocation, Dimmock & Chapman, February 15, 201

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


    As you know, I retired from advocacy work in early October, but I continue to monitor the ICD-11 platforms for my own interest.

    If there are any changes to the current listing of these terms, which can be viewed below without registration, or if the proposal submitted by Dimmock and Chapman on March 27, 2017 is processed or commented on by WHO admins, MSAC or CSAC, I will post further information:

    Blue Platform (ICD-11 "Implementation Version" as released in June 2018):
    ICD-11 for Mortality and Morbidity Statistics (Release for 2018):

    https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

    Orange Platform (ICD-11 Maintenance):
    Foundation Component:
    https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/569175314
    Mortality and Morbidity Statistics: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314
     
    Last edited: Nov 20, 2018
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  16. Inara

    Inara Senior Member (Voting Rights)

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    This is good news, thank you Suzy.

    I am concerned that WHO views "disabling fatigue" as the leading symptom in ME/CFS. But, well...
     
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  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks Suzy. I expect that it was very largely your work which let us dodge a bullet here - I'm very grateful. Particularly as now you've retired I don't think we would have been able to organise a response to Dua's proposal being accepted that would have been half as good as one you'd led.

    Your pre-emptive work is really a lesson to us on effective advocacy. I feel like I tend to ignore complicated processes like these as they're slowly trundling along, and then get outraged after things have gone against us. It's so much more sensible to be engaging in the difficult and (imo) boring work of carefully and steadily challenging any problems as soon as they appear.
     
    Last edited: Nov 20, 2018
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @Dx Revision Watch
    I was just reading about when the APA went for you...........
    "
    A few years ago, British writer Suzy Chapman started tracking the proposed changes by the American Psychiatric Association (APA) to psychiatry's guidebook: the Diagnostic and Statistical Manual of Mental Disorders (DSM). She also tracked the development of the World Health Organization's International Classification of Diseases (ICD) and followed a number of related topics. She took her domain name from the 5th revision to the DSM, dsm5watch.wordpress.com, and she developed a loyal following of patients and practitioners interested in how APA and WHO were changing the definitions of various health conditions.

    Over Christmas 2011, she received two "cease and desist" letters from American Psychiatric Publishing, an arm of APA. The letters were standard legal boilerplate".

    wow.
    https://www.centerforhealthjournali...tion-pressures-brit-dsm5-blogger-suzy-chapman
     
  19. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Thank you Suzy for keeping this updated.
     
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  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Decisions still pending:

    Proposal to remove "Benign" from "Benign myalgic encephalomyelitis."
    Proposals for exclusions for ME and CFS under BDD, and exclusion for BDD under ME and CFS.
    (Proposals for exclusions for ME and CFS under "Fatigue" in the Symptoms, signs chapter were implemented in March 2017.)
    Lily Chu's proposals on behalf of the IACFS/ME (similar to above but proposes three discrete codes for PVFS; CFS; and ME).


    Dimmock/Chapman proposals for ICD-11:

    Extract from proposal submitted by Dimmock and Chapman on March 27, 2017: Proposal: Revision of G93.3 legacy terms for ICD-11



    [​IMG]
     
    Last edited: Nov 20, 2018
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