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Questions: ICD-11 and dx revision proposal

Discussion in 'Advocacy Projects and Campaigns' started by Inara, Oct 30, 2017.

  1. Inara

    Inara Senior Member (Voting Rights)

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    This thread refers to @Dx Revision Watch's allusion to their proposal to WHO to change the ME caption in ICD-11, see https://dxrevisionwatch.com/2017/04...cd-10-g93-3-legacy-terms-for-icd-11-part-one/ and https://dxrevisionwatch.com/2017/04...cd-10-g93-3-legacy-terms-for-icd-11-part-two/

    First, many thanks to you for pointing to this process, I didn't know of it.

    I understood your aims are the following (citation from Part Two):
    • that the terms should be retained in the neurological chapter (Chapter 08: Diseases of the nervous system);
    • that the terms should be retained under the parent class: Other disorders of the nervous system;
    • that ME and CFS should each be assigned separate codes;
    • that PVFS is not an appropriate title term for ME to sit under (not all cases of ME are preceded by a virus).
    The first two points are clear. I think it's crucial to avoid any F classification.

    Just a side question: Science literature gives several clues that ME is somehow linked to an immune disfunction/deficiency/pathology - isn't that important for categorizing in ICD? What counts is the major system affected (like in MS, e.g.)?

    In your proposal, PVFS shall sit under ME as a synonym.

    A synonym is a different term to an exististing term for a common object, i.e. behind each synonym are common characteristics of this one object. Each exististing term can be used interchangeably without changing the meaning.
    So, if I read in ICD-10 "PVFS" and then "synonyms", I understand that I can use each expression interchangeably, while always the same object is meant. This doesn't change if PVFS sits under ME, these are still synonyms.
    However, I guess WHO doesn't mean it that way, does it?


    Here my questions:
    • If not every case of ME follows a viral infection, wouldn't it be correct to remove it completely? Or to have an extra code for PVFS?
    • You want an extra code for CFS and ME. This means you assume both medical diseases are disjunct (with possibly common symptoms). Why is that? What are the symptoms that make each disease unique and disjunct?
    • Is it reasonable to propose an ICD change of categorization when the underlying processes and pathologies in ME aren't still completely understood and subgroups aren't clearly identified? It's not even clear today if any of the names "ME, CFS, CFIDS, SEID" and so on are good descriptions of the disease.
    My concerns:
    • In UK, preferably ME is used, in USA ME/CFS (?), and in Germany (unfortunately) CFS. At least here, nearly every doctor doesn't even know there is an ICD code G93.3 - not even neurologists. I am pretty sure no one here knows or will know the difference between "CFS" and ME (if one exists, see above). Some have heard of the "psychological illness CFS" (which has no ICD code). So my concern is that at least for Germans it will be made even harder to escape the psycho stigma.
    • Some say "CFS" is no disease at all, see e.g. The Nightingale foundation. They say, behind "CFS" must be other medical or psychological illnesses.
    • In my opinion, "CFS" s a brutal euphemism which is laughed about. People who hear "chronic fatigue" in fact hear "chronically tired" (not many know there is indeed a difference, including doctors) which is ridiculous. The reactions are accordingly. You are instantly put into the psycho corner, for one. "Myalgic encephalomyelitis" may not be correct - since not all affected seem to have muscle pain and/or brain inflammation (but how do they know exactly?!) - but the ICC experts have a different opinion. So at this point, I think it's more important to acknowledge that if people hear "myalgic encephalomyelitis" they look at you and say: "That sounds terrible! What is that?" which hits the reality better than "poor you, soooo tired, yes? Just need to find your fulfilling job or another partner!" :confused:
    Besides, I don't have muscle pain in rest. I understood that's not necessary to have the symptom "muscle pain". But my muscles burn in the instant I use them as if I were doing a high intensity workout, and muscle weakness sets in very fast. E.g. I have to make a brief rest when showering or brushing my hair since my arms burn, or I have to take stairs very slowly since my legs burn immediately, plus hard breathing and high pulse. Maybe some of you know that, too, but won't call it "muscle pain"?


    I'd be happy if my questions found some answers! :)
     
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  2. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    Hi Inara,

    WHO/ICD Revision has issued several statements that there is no proposal and no intention to relocate CFS, ME under the ICD-11 Mental, behavioural or neurodevelopmental disorders chapter.



    In our full submission, you will find our rationale for not suggesting a change of chapter at this point.

    See Rationale sections
    3, 3.1, 3.2, 3.3

    PDF of full submission here: http://bit.ly/2mQxWTS



    There is an ICD-11 Definition and guidance for Synonym terms which I will dig out for you.


    Requesting a discrete code for PVFS was an option we considered.

    All requests for changes are expected to be supported with rationales and references. Since PVFS is poorly defined, including in terms of duration, it would have been difficult to have provided a rationale for assigning a discrete code for PVFS, at this point, or to have provided a draft Definition/Description text for PVFS.

    We provided the following in support of our request that ME and CFS should each be assigned a code:

    Rationale sections:
    3.4 Assigning unique codes for chronic fatigue syndrome (CFS) and myalgic encephalomyeltis (ME)
    4. Definitions


    PDF of full submission here: http://bit.ly/2mQxWTS

    Note that we have not requested inclusion of the terms "CFIDS" or "SEID".

    At the point that we prepared our submission, the three G93.3 legacy terms had been removed from the public version of the Beta drafting platform and had been absent from the public version of the draft since early 2013.

    Prior to that, CFS had been proposed as the new lead (Title concept) term for ICD-11, with BME the Inclusion term. PVFS had been proposed to be removed as the Title concept and relocated under Synonyms to CFS.

    So at that point, ICD Revision had been proposing CFS as the new lead or Title term.

    I had been advised by Dr Christopher Chute in February 2017 that "Evidently, there are plans to include these terms as index entries."

    The terms were not restored to the draft until the day before we completed uploading our submission. (ICD Revision admins were aware that we were uploading a new submission in draft.)

    So our submission was drafted on the basis that the terms were absent from the draft.

    We considered that the terms should be restored to the draft but that it was preferable to request separate codes for CFS and ME.

    We also requested a change of hierarchy between PVFS and ME, rather than request a restoration of the ICD-10 status quo or a return to how the terms had stood in the ICD-11 Beta draft in early 2013, before they were removed, ie, when CFS was being proposed as the new Title concept term.

    I will respond to the remaining points, later.

    Suzy
     
    Last edited: Oct 31, 2017
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  3. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    It's not clear to me whose preferences you are referring to - agencies' preferences or to patients' preferences?

    If you mean agencies, the preference of NHS and other agencies is to use CFS/ME or Chronic fatigue syndrome (and in some cases, "chronic fatigue"). SNOMED CT lists CFS as "Preferred" term, with ME as "Acceptable". SNOMED CT is being adopted for use in NHS primary care from April 2018 and across all NHS clinical settings from 2020.


    My understanding is that the CDC has begun to use the hybrid term "ME/CFS". Other agencies within the U.S. Department of Health and Human Services, including the National Institutes of Health, are already using "ME/CFS."

    Note though, that in ICD-10-CM, CFS and BME are located in different chapters.

    DIMDI is responsible for maintaining the German ICD-10-GM modification. Whatever ICD-11 eventually decides for these terms, and there is no guarantee that they will accept our proposals, DIMDI may choose not to follow the ICD-11 for its German modification of ICD-11.

    http://www.dimdi.de/static/de/klass...inefassungen/htmlgm2018/block-g90-g99.htm#G93

    Release for 2018:

    G93.3 Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome]
    Chronisches Müdigkeitssyndrom bei Immundysfunktion
    Myalgische Enzephalomyelitis
    Postvirales Müdigkeitssyndrom

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

    Currently the ICD-11 Beta draft stands like this:

    [​IMG]


    The terms were restored to the Beta draft on March 26 with this caveat:

    “While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”
     
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  4. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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  5. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    From the ICD-11 Beta Content Model

    4.1.1 Synonyms

    Definition:

    Alternative names for the same entity, possibly in multiple languages. (e.g. Coronary Infarction is a synonym for Myocardial Infarction)
    Rationale:

    1. To indicate similar terms that are commonly used for the same entity
    2. To enable coders and translators to specify the term

    Common terms and medical jargon may be included. Synonyms are not intended to be used interchangeably with the entity title. New synonyms may be proposed by the users of the iCAT platform during the joint editing process. The entity title will have precedence over synonyms for international reporting.
     
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  6. Inara

    Inara Senior Member (Voting Rights)

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    Dear @Dx Revision Watch, thank you so much for taking so much time! It will take some time from side to look at everything thoroughly which I will definitely do. I am sure I will learn a lot, and I guess I will return with questions. :)

    (I hope this topic wasn't already discussed elsewhere?)
     
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  7. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    Regarding the handling of PVFS for ICD-11:

    As well as considering (but rejecting) requesting that PVFS is assigned a separate code for ICD-11 (and we would have needed to provide a rationale, a Definition/description and also proposed a chapter and parent class for PVFS) we also gave consideration to requesting that PVFS was listed in the Index, only (but not listed as a retired term).

    My reasoning for not doing this was as follows:

    as I've said above, when Mary and I were drafting our proposal, in February and March, the three G93.3 ICD-10 legacy terms had been inexplicably absent from the Beta draft since early 2013. Numerous approaches by me and approaches from patient organisations had failed to achieve the restoration of these terms to the draft.

    I had been told by Dr Chute, in February, during the Köln Joint Task Force meeting:

    This was discussed today in Köln. Evidently, there are plans to include these terms as index entries. I would advise, that you:


    a) Create a Beta draft proposal entry for these terms and/or

    b) Identify an existing draft proposal and add evidence.


    My concerns were this:

    since early 2013, the terms had not been represented in the public version of the Beta draft under any chapter. ICD Revision were being obstructive about providing information about current proposals and rationales for their current proposals (or rationales for the lack of proposals).

    But when the terms were last accounted for in the draft, the proposal had been:

    Title term: Chronic fatigue syndrome
    Inclusion term to CFS: Benign ME

    Synonym term to CFS:
    PVFS


    Dr Chute tells me, in February, that evidently there were plans to include these terms as index entries (though he does not specify which of the three terms he is referring to).

    Since index entries require a code to point coders and clinicians to, then at least one of the three terms would need to be included and coded for in the MMS Linearization.

    Since the proposed hierarchy between the terms in early 2013 had been CFS as Title concept term, BME as specified Inclusion term and PVFS as Synonym term, they had evidently reached consensus in early 2013 to deprecate PVFS as the lead term.

    My guess was that if Dr Chute's information was correct at that time, they might have been considering CFS as the sole category term in the Foundation and MMS Linearisation - where it would be assigned a code - but including PVFS and BME as index terms only.

    (We should not have had to second guess, but dealing with ICD Revision is like trying to nail jelly to the ceiling.)

    If we proposed that PVFS should be listed only as an Index term, ICD Revision might take the view that if we are OK with PVFS being demoted to an Index term only, it might prompt them to also remove BME as the Inclusion term to CFS and stick both BME and PVFS in the Index, where they would point to whatever code was assigned to the single category, CFS.

    So I could not agree to PVFS being proposed as an Index term, as I considered it might have repercussions for the status of BME and its inclusion within the MMS Linearisation.
     
    Last edited: Oct 31, 2017
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  8. Inara

    Inara Senior Member (Voting Rights)

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    May I ask a side question again - it just came into my mind when looking at the Komaroff references (I will forget it otherwise, I'm sure)? Do you know by chance why in the past Mr. Komaroff was one of those on the "FDA panel" who rejected Ampligen? (I hope I'm informed correctly.)
     
  9. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    You are very welcome, Inara.

    If you don't want the hassle of registering for access to the Beta Proposal Mechanism, the full proposal is in this PDF here http://bit.ly/2mQxWTS

    My intention is to create a new thread specifically for developments with ICD-11, SNOMED CT and other classification and terminology systems and I will do that in the next few days. I shall shortly have some new information about SNOMED CT.

    One point - I've been asked how did ICD Revision know that we were about to submit a proposal.

    I had uploaded the proposal in sections over the course of a couple of weeks. In fact, the morning it went live we were still drafting the remaining text to get it finished before the March 30 deadline.

    When you first open a proposal it displays to the ICD Beta admin staff that a proposal has been started in draft format (but the public can't see it at that stage).

    Dr Robert Jakob saw that I had created a proposal draft for the G93.3 legacy terms as a few days later, he posted a message for me in response to my draft. So even if he wasn't monitoring the text of the draft as it was uploaded, section by section, over the course of a couple of weeks, he was certainly aware that a draft was in progress.

    Then, on March 26, the day before we hit the "live" button, the Beta admins restored the terms to the draft with a caveat.

    On the same day, they also approved two long-standing proposals of mine for adding Exclusions for BME and CFS under Fatigue, in the Symptoms, signs chapter. (Though they did not and still have not, approved my request for an Exclusion for PVFS under Fatigue. I have asked them to attend to this.)
     
    Last edited: Oct 31, 2017
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  10. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    Sorry, but I don't have any information about that.
     
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  11. Inara

    Inara Senior Member (Voting Rights)

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    Another question :)

    Mr. Komaroff says that science results show low grade inflammation in the brain and/or elsewhere in the central nervous system. (A PET scan showed something like that in my case.) When reading "Osler's web", other papers "of the past" and the Nightingale's Foundation website, I understood that this is a main problem in ME and justifying the term "ME" (to which I personally agree), leading to ICC experts agreeing on ME. I asked my immunologic doctor why they use the term "CFS" and not ME. One of the answers were that there is no evidence at this point of inflammation in the brain. This seemed odd to me. (E.g. there's a newer Japanese PET study showing something like inflammation in the brain.) Do you have an idea concerning these contradictory statements?
     
    Last edited: Nov 1, 2017
  12. Inara

    Inara Senior Member (Voting Rights)

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    Thank you! :)
     
  13. Inara

    Inara Senior Member (Voting Rights)

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    Do I understand you correctly at this point that it was planned to remove G93.3 (ME, CFS) completely from ICD-11? And that when the ICD Revision saw a proposal was drafted they kept it?
     
  14. Inara

    Inara Senior Member (Voting Rights)

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    Oh my, again a question - I don't know the ICD system at all...

    Are the national ICDs independent from WHO's ICD? E.g. could DIMDI decide not to follow changes in ICD-11 or to make changes themselves, e.g. remove ME/CFS? I recall there's a contract between WHO and the national countries stating amongst others that each country will stick to ICD classification. Still, what are political contracts these days...

    Is it therefore needed to do advocacy towards DIMDI, or are you already including that?
     
    Last edited: Oct 31, 2017
  15. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    No.

    There is no evidence that it had been their intention to remove the terms altogether from the classification. Even retired ICD-10 terms are not removed from ICD-11, but will be marked as "Retired" in the final version.

    ICD Revision has been asked to clarify, several times, why the terms had been taken out of the public version of the Beta draft in early 2013. They have not provided the reason for why this was done. The drafting is carried out on a separate, more complex platform that is not accessible to the public and it is likely that the terms were sitting in a "holding pen" category on the platform that ICD Revision uses, pending the working group that had responsibility for these terms reaching consensus about how they should be classified for ICD-11.

    I had a phone conversation with Dr Jakob in June 2015 and was told that the work group had not yet reached consensus about parent classes. But he also told me:

    [​IMG]

    By March 2017, the work group for Neurology (TAG Neurology) had ceased to operate. It appears that many of the various working groups ceased operating in October 2016 and the Revision Steering Group also ceased its operations in October 2016.

    So at the point at which Mary and I submitted our proposals (March 27, 2017) there was no longer a working group responsible for making recommendations for the revision of the categories that sit under the ICD-10 chapter for Diseases of the nervous system.

    So decisions now fall to the WHO classification experts, for example, Dr Robert Jakob, the Joint Task Force (that took over from the Revision Steering Group) and the MASC committee.

    ICD Revision is overambitious and under resourced and has already been postponed several times. They will struggle to have it in a fit for purpose state for release in June 2018.
     
    Last edited: Oct 31, 2017
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  16. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    I am a UK advocate and I have no involvement in the German ICD-10-GM or in the development of ICD-11-GM. Your best plan is to discuss this with German ME, CFS patient organizations.

    Some countries have been licensed to develop and manage country specific adaptations of ICD-10, for example, Germany, US, Australia and Canada, and to make changes to suit their own health systems.

    In the US, ICD-10-CM was developed by NCHS and CDC. There are many changes from the ICD-10, as used by the UK and many other member states.

    The US has CFS in the Symptoms, signs chapter in the Tabular List and PVFS and BME in the Neurological chapter.

    But in the WHO's ICD-10 that we use in the UK, CFS is listed only in the Index, where it points to G93.3 - it has never been added to the Tabular List. (But for ICD-11, CFS is now in the ICD-11 Beta's equivalent of the Tabular List.)

    In Canada's ICD-10-CA, all three terms are under G93.3 in the Tabular List.

    In the US adaptation, there is no "Fatigue syndrome" as an inclusion under Neurasthenia, and Neurasthenia has a different code (F48.8) to the WHO's version, which has Neurasthenia at F48.0. There are other changes elsewhere in the US version.

    DIMDI's ICD-10-GM has four terms at G93.3, with CFS already as the lead (or Title concept) term rather than PVFS, as in ICD-10, and with three Inclusion terms sitting under CFS:

    G93.3 Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome]
    Chronisches Müdigkeitssyndrom bei Immundysfunktion
    Myalgische Enzephalomyelitis
    Postvirales Müdigkeitssyndrom


    So yes, some countries are licensed to adapt ICD-10 to suit the needs of their own health systems and they can make changes as long as they do so within the ICD-10 classificatory guidelines.

    To what extent the country modifications will be permitted to make changes to the core ICD-11, once it has been released, is still being formulated by ICD Revision. I have some information on this from meeting summaries that I can dig out for you tomorrow if you would like to have it.
     
    Last edited: Oct 31, 2017
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  17. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    How up to date is your doctor on recent research?
     
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  18. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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  19. Inara

    Inara Senior Member (Voting Rights)

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    Hi Suzy,

    Again, I'm so glad you take time to answer my questions.

    I see that WHO's defjnition is slightly different than the general definition of "synonym" in that they saý they cannot be used interchangeably. Thanks for this!

    I believe this decision is reasonable, taking this fact into account.

    If I understand correctly, your cardinal difference between "CFS" and "ME" is PEM/PENE. This makes sense to the informed person and it makes sense for WHO (due to the scientific literature you provide). Still, I feel uncomfortable with it, due to political reasons. Of course I see that ICD is not about politics but about classifying diseases according to scientific findings. So maybe this "uncomfortableness" doesn't belong here and must be tackled elsewise.

    I wonder if it was more reasonable to drop the term "CFS" completely. I understand that there exists fatigue, most often as a symptom of other diseases, and I'll include inflammation in general to that. But most doctors know close to nothing. I fear, at least in Germany, doctors will diagnose "CFS" instead of ME due to simplicity, ignorance, laziness and misinformation from officials (e.g. DEGAM); most doctors haven't heard about ME, but some about CFS. They will do symptom picking or symptom invention (my experiences) and then it's CFS. E.g. they simply ignored my PEM/PENE experiences, invented and picked symptoms et voilà! Depression!

    I do see that that distinguishing ME and CFS is the correct way and that it may be more advantageous politically, too, at least in the long term. But still, CFS remains a bit unclear, something unknown, and again I wonder if it would be better to drop it. Even Mr. Komaroff agrees that choosing CFS was ill-advised.

    I do agree with the Nightingale foundation that behind the symptom fatigue has to be some other illness. I am not marginalizing fatigue.

    I know. :) It was a subtle criticism to all these existing terms. It's perfect you didn't include SEID or CFIDS.
     
  20. Inara

    Inara Senior Member (Voting Rights)

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    Quite up to date, I think, this person is a scientist herself, but more in the immunologic field. That's why I was very surprised.
     
    Last edited: Nov 1, 2017

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