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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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    It's more an impression. In Germany nearly never ME is used, not even by "experts", elsewhere at least the term ME/CFS. So there, ME is not unknown.

    Thanks for pointing to SNOMED CT, never heard of this one before.

    "Chronic fatigue" is listed as R53.82, and it excludes postviral fatigue syndrome (G93.3), with "Approximate Synonyms" CFS. So, actually, here is an extra code for CFS, which I didn't know. So, is your proposal referring to positioning this CFS section (now R53.82 ) to the G-section? As I understood, chronic fatigue is something that might also occurr after chemo (I guess the rate was ca. 70%), in MS, Aids and others.

    Again, I learned something new!

    Why then, for God's sake, are ME and CFS (ME/CFS) used as synonyms by officials and doctors...? Or is this just a German problem, that both aren't distinguished? Obviously, WHO has the standpoint they are distinct illnesses.

    This means, we should get active here, right, in order to guarantee they won't do mischief? If so, how? Or will your work as a team include this? How will it be in other countries?
     
  2. Inara

    Inara Senior Member (Voting Rights)

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  3. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    You are welcome.

    Note that the WHO's unmodified ICD-10 does not include Synonyms, per se, in the Tabular List. In the Tabular List, ICD-10 lists the Title category, any inclusions to the Title category and any exclusions. There may be associated or alternative terms in the Index which point to the Title code.

    So, for example, in the unmodified ICD-10, we have PVFS as the Title category, with BME listed as its inclusion. CFS is in the Index, where it points to the G93.3 code.

    WHO says this about ICD-10 Index terms:

    According to a February 2009 response from WHO HQ Classifications, Terminology and Standards Team, terms that are listed in the Index may be:

    a synonym to the label (title) of a category of ICD;

    a sub-entity to the disease in the title of a category;

    or a “best coding guess”

    The Introduction to ICD-10 Volume 3: The Alphabetical Index Version for 2006 lists several possible relationships between a term included in the Alphabetical Index and a term included in the Tabular List to which it is indexed:

    “The terms included in the category of the Tabular List are not exhaustive; they serve as examples of the content of the category or as indicators of its extent and limits. The Index, on the other hand, is intended to include most of the diagnostic terms currently in use. Nevertheless, reference should always be made back to the Tabular List and its notes, as well as the guidelines provided in Volume 2, to ensure that the code given by the Index fits with the information provided by a particular record.

    “Because of its exhaustive nature, the Index inevitably includes many imprecise and undesirable terms. Since these terms are still occasionally encountered on medical records, coders need an indication of their assignment in the classification, even if this is to a rubric for residual or ill-defined conditions. The presence of a term in this volume, therefore, should not be taken as implying approval of its usage.”


    In indexing Chronic fatigue syndrome to G93.3, ICD-10 does not specify whether it views the term as a synonym, a sub-entity or “best coding guess” to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis. Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis.


    The structure of ICD-11 is far more complex than ICD-10 and will contains, potentially, more information about category terms, set out according to the ICD-11 "Content Model". Category terms in ICD-11 are listed hierarchically and a coded for term may have one or more coded for "child" categories or "grandchildren" sitting beneath it.

    There will be a Title concept term; its parent class or classes (if it is listed under one or more parents or under more than one chapter, which is permissible for ICD-11); a Definition/Description text (although many of these texts are not yet completed); it will list any specified inclusion terms (under "Inclusions", in the Foundation linearisation and at the top of the Synonyms list, in the MMS linearisation); there may be a list of "Narrower terms"; then a list of any Exclusions. Some category terms have even more information included.

    Additional terms listed under Synonyms and Index terms may be alternative clinical terms, terms more commonly used by patients, or historical terms that are now rarely used.

    ICD-11 includes terms like "charley-horse" under index terms which is a colloquial U.S. term for muscle cramps.


    For example, for ICD-11, the current listing for PVFS, has PVFS as the Title concept term. CFS and BME are both specified under Inclusions and take the same code as PVFS:

    https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314

    Currently the list of Synonym terms (which are also listed as Index terms) is:
    • akureyri
    • akureyri disease
    • CFS - [chronic fatigue syndrome]
    • chronic fatigue, unspecified
    • epidemic neuromyasthenia
    • iceland disease
    • icelandic disease
    • myalgic encephalomyelitis
    • myalgic encephalomyelitis syndrome
    • ME - [myalgic encephalomyelitis]
    • PVFS - [postviral fatigue syndrome]



    Whilst both Mary and I do not like the CFS term, we had to be realistic in our proposals. Given that in 2013, ICD Revision were considering making CFS the Title term, we did not feel they would give any consideration to retiring the CFS term, altogether.

    The following extract isn't from the proposal's rationale text but from a Q & A I prepared about the proposal and it sets out our rationale for not requesting that the CFS term is retired:


    Q1: Your proposal for ICD-11 does not recommend retiring CFS. Why is that?

    A: Realistically, CFS cannot be retired from the classification at this time.

    Some patients and advocates have expressed concerns that our proposal does not recommend
    retirement of CFS. We share concerns about the CFS term.

    However, realistically, chronic fatigue syndrome cannot be removed from ICD at this time
    because the term will continue to be used clinically, is required for social security, insurance and
    reimbursement and will still be included in other globally used electronic health record systems.
    For example, chronic fatigue syndrome is specified as the preferred concept term in SNOMED CT
    International Edition and its National Extensions. ICD-11 has been designed to link with SNOMED
    CT and the cross mapping between the two terminology systems is in preparation.

    If ICD Revision could be persuaded to retire the term, the owners of SMOMED CT would need to
    be convinced, too. SNOMED CT is used in over 80 countries. As mentioned in Q5, SNOMED CT
    will be adopted in the UK for NHS primary care use by 2018, replacing the Read Codes (CTV3)
    terminology system and is scheduled for implementation across all NHS clinical settings by 2020.
    Since ICD Revision was proposing between 2010-2013 that CFS should be elevated to the lead
    (or "concept title") term, and in the absence of any alternative consensus proposals from the
    work group since early 2013, we considered it unlikely that a strong enough case for retiring the
    term, at this point, could be built.

    Unlike the U.S.'s ICD-10-CM, ICD-11 won't implement, globally, on a specific date – it will be a
    staggered and lengthy adoption process.

    Over a hundred countries use ICD-10, including countries licensed by WHO to develop national
    modifications, like Canada, the U.S. and Germany, which already have CFS in their Tabular Lists.
    WHO requires statistical comparability between one ICD edition to another for data analysis.
    During the transition period (which will span several years and potentially longer, in the case of
    Canada and the U.S.), statistics will continue to be collected using ICD-10 alongside data using
    the new version, until the majority of Member States have implemented the new edition.

    Given these considerations, we consider there is a strong possibility that ICD Revision
    would reject outright any submission that includes a proposal for the retirement of the
    CFS term, during the early years of the transition process where data collected from
    two editions will be aggregated for analyses.

    At some future point, scientific advances will hopefully provide robust evidence to support a case
    for retirement of the CFS term and/or for relocation of ME to another chapter, or for parenting
    ME under multiple chapters, or for creation of a specific parent class for ME, at which point, new
    proposals can be submitted via the annual update and revision process.

    ICD Revision's, Dr Christopher Chute, wrote to me, on February 22: "What is produced say in
    2018 will continue to evolve, ICD11 is designed for graceful evolution. It may differ in
    substantial ways by the time the first country implements it, say 5-6 years from now from what
    is put forth in 2018."

    There was uncertainty around ICD Revision's intentions for the three legacy terms while we were
    drafting our proposal and that uncertainty continues. Given the March 30 deadline for submission
    of proposals for potential inclusion in the initial 2018 release, the absence of any proposals from
    the work group and the non disclosure of the WHO classification experts' and Joint Task Force's
    position on these terms, it was considered strategically preferable to propose what we felt stood
    a chance of consideration than to submit recommendations we felt risked outright rejection.
     
    Last edited: Oct 31, 2017
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  4. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    It is similar in the UK - the term ME is not used very much by clinicians and agencies. It is more common for them to use CFS or CFS/ME and the NICE Guideline also uses "CFS/ME".


    No.

    The listing of "Chronic fatigue" at R53.82, with CFS NOS as its inclusion term in the Symptoms, signs chapter is exclusive to the US's modification, ICD-10-CM.

    In the WHO's unmodified ICD-10, CFS has always been indexed to G93.3, though listed in the Index only.

    In the ICD-11 Beta, there is a "chronic fatigue, unspecified" listed under Synonyms/Index terms. It should not be there but has been scraped from the ICD-10-CM. I have submitted a formal proposal and rationale for the term to be deleted from the Index list. How terms that are exclusive to one of the ICD-10 country modifications are incorporated into ICD-11 is still evolving.

    For ICD-11, there are already Excludes for CFS and BME under "Fatigue" in the Symptoms, signs chapter. These were approved on March 26. ("Fatigue" was "Malaise and fatigue" in ICD-10.)

    See: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/1109546957

    So no, our proposal most definitely does not propose moving "chronic fatigue" under the equivalent of the G codes.

    Note that the chapter numbers and coding structure for ICD-11 is completely changed. There will be no "G" codes in ICD-11.


    No it's not just a German problem.

    It's not obvious that "WHO has the standpoint they are distinct illnesses".

    It is not the policy of WHO/ICD to use acronyms as Title concept terms or to combine two terms that are already classified separately in ICD.

    WHO has never issued a public statement setting out what it understands by the terms "PVFS", "CFS" and "BME" and how it differentiates between them. You will need to familiarise yourself with the history of the evolving of the terms in ICD.

    Although Definitions/descriptions can be included in ICD-11, ICD Revision has proposed no separate definition text for these terms and there is currently no definition text, at all, in the Beta draft for any of these terms.

    ICD Revision will only engage with stakeholders via the Proposal Mechanism. Which means registering for access to the Proposal Mechanism and commenting on existing proposals or submitting new proposals or for changes to existing proposals. Changes and new proposals need to be supported with citations.

    Note that the deadline for proposals for consideration in the June 2018 release of ICD-11 was March 30. Proposals received after that date are anticipated to be rolled forward for consideration for the first annual update of ICD-11, which would be in 2019.

    How will what be in other countries? Not sure what you are asking here.

    As to the history of the classification of PVFS, BME and CFS in ICD, you may find this document helpful:

    https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf

    A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases
    Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, CDC archive document, March 2001.

    Note that at 2001, when the document was published, it had been the intention for the US ICD-10-CM to have all three terms coded to G93.3 (as Canada and Germany already has). This changed in 2004. "CFS, postviral" was removed from under G93.3 but CFS NOS retained under R53.82 in the Symptoms, signs chapter, as the only entry for CFS. Again, this arrangement is exclusive to the US's ICD-10-CM and it remains controversial.
     
  5. Inara

    Inara Senior Member (Voting Rights)

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    Honestly, I cannot tell since I obviously lack deep understanding of the processes.

    Due to my experiences, I think "Chronisches Müdigkeitssyndrom" = CFS should be dismissed from G93.3. Under R53 you find "Unwohlsein und Ermüdung". (Well... :confused:) I think that the ICD-CM classification is better than the GM version in this since CFS has it's own code. I remember there was a code for fatigue (e.g. after chemo treatment...), but I can't find it. Wouldn't these would be good places for CFS?

    I think your proposal is thought through and well grounded. Only about CFS I am not so sure. So, I would prefer a categorization like you proposed also for DIMDI, something like

    G93.3 Myalgische Enzephalomyelitis
    Chronische Fatigue bei Immundysfunktion
    Postvirales Fatiguesyndrom

    Tiredness is not equal to fatigue. That DIMDI uses tiredness for fatigue is a bit poor. I also agree "benign" should be skipped. Lots of persons with ME now and then show that this illness can progress if treated falsely, and that there can be a "point of no return".
     
  6. Inara

    Inara Senior Member (Voting Rights)

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    I don't understand it completely, although I get a feeling for the problem. Could you explain it differently?

    My feeling is that, again, the term CFS is the problem, that the ICD revision wanted to fix on that, and leaving ME and PVFS as "redundant" - wrong?
     
  7. Inara

    Inara Senior Member (Voting Rights)

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    I hope I am not unjust by saying this, but I don't expect too much from German patient organizations. :( but I will try nonetheless. Is there any way to be successful as a private person? I think it's wise to do some advocacy in this regard. If you have any info or tips, I'll be really glad.

    Would you say that DIMDI's ICD-10-GM comes close to your proposal? Would you say, with respect to classification, index entry, title and subtitle ICD-10-GM is okay? Would you say, acting/coordinating internationally would be more promising?

    I'd be very interested and thankful.
     
  8. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    The equivalent to ICD-10's R53 Malaise and fatigue?

    Many US patients and advocates are not happy with the ICD-10-CM's current structure for CFS and its location under the Symptoms, signs chapter, as an inclusion under R53.82 Chronic fatigue.


    There are these inclusions under R53 in the German modification:

    https://www.dimdi.de/static/de/klas.../onlinefassungen/htmlgm2018/block-r50-r69.htm

    R53 Unwohlsein und Ermüdung
    Inkl.:
    Allgemeiner körperlicher Abbau
    Asthenie o.n.A.
    Lethargie
    Müdigkeit
    Schwäche:
    • chronisch
    • o.n.A.

    Not as things stand at the moment, for the reasons in Post #23. We are also facing the situation in the UK where patients diagnosed with CFS or CFS/ME are being channeled into all purpose MUS (Medically unexplained symptoms) or PPS (Persistent physical symptoms) services for CBT, while some specialised CFS services are being decommissioned.

    If CFS were located under "Fatigue", there are no guarantees that clinicians will re code patients with ME and code them for ME. It could be very detrimental for UK patients with an existing diagnosis of CFS or CFS/ME or who are awaiting a diagnosis.

    You will need to watch out in Germany, too, for Fink's BDS, that subsumes IBS, FM, CFS, ME and some other illnesses under a single diagnostic category and which is spreading from Denmark into some other EU countries. And also for CFS patients being treated as "Functional disorders." If CFS were shifted under "Fatigue" at this point, it would make it easier to apply a label of BDS or of "Functional disorder".

    As I've said already, ICD Revision has already approved my request for Excludes under "Fatigue" for CFS and for BME.

    That structure would be similar to the Canadian modification, that is, all three terms under one code, except the Canadian mod has "Chronic fatigue syndrome" not "Chronic fatigue with immune disfunction (or however that inclusion term translates into English) and has retained PVFS as the Title term.

    Do you think DIMDI should have used "Ermüdung" instead of "Müdigkeit"? It has translated ICD-10's "R53 Malaise and fatigue" to "R53 Unwohlsein und Ermüdung".

    (I am not a German speaker, so I am relying on Google Translate, here.)

    Indeed. Mary and I are very keen to see "Benign" omitted.
     
    Last edited: Oct 31, 2017
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  9. Inara

    Inara Senior Member (Voting Rights)

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    Hi Suzy,

    Okay, I now understand the problems with the term "CFS" and WHO much better. I think at this point, it will be a long-term goal to have CFS removed and that your decision to hand in your proposal as it is now is reasonable.

    I know, this is a huge problem. It is crucial, I think, to step up against that. I try to get some inspiration from the anti psychiatry movement, and it seems wise to me to integrate their statements and knowledge.

    I have the feeling the Germans are very big "psyche fans" and everything that goes with it (it's crazy and sad :( ), and I understand it's quite comparable to the UK (?). So, I do know about the problem to subsime as much as possible under "psychiatric illness". Psychiatry is a power complex providing an educational and disciplinatory means, and by the way fulfilling the financial wishes of the insurance companies.

    I don't know Fink. Do you have more information? I 'm getting very anxious when reading something like that. And I want to take action, but I simply don't know how. So, the more I read the more I agree that CFS should be kept where it is until science will give more clarity. And that advocacy is needed to remove CFS in the future.
     
  10. Inara

    Inara Senior Member (Voting Rights)

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    I think DIMDI's translation of "malaise" and "fatigue" is a little extraordinary. Malaise and fatigue originally are French words, but they are used in German language, too. I understood that fatigue and malaise are states (fatigue = deep exhaustion that will not improve with rest, which is not equal to tiredness; malaise = feeling deeply unwell, maybe including weakness and pain and melancholy). From sports I know there are three levels of "tiredness":
    1) tiredness (Müdigkeit): You feel tired, but by using your will your muscles can still perform, even high intensitiy performances
    2) fatigue (Ermüdung): You feel extremely tired, but you can still perform, excluding high intensities
    3) exhaustion (Erschöpfung): There is no way to let your muscles work any longer, they burn, there are maybe cramps and they won't do as you wanna do. Exhaustion will set in after high intensity performances, like after a competition. Very thorough rest is needed.

    So, "Ermüdung" would be more accurate for "fatigue", but one could even keep fatigue itself, as well as malaise.
    In ME, generally there is exhaustion, which is more than fatigue or being tired. So, CFS is not accurate. (Only my opinion.)

    Okay, I have checked on the definition of fatigue and my understanding of it may be not totally correct.
     
  11. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    Sorry, it was a rather clunky paragraph. I'll try again:

    In early 2013, the work group for the Diseases of the nervous system chapter were proposing a change to the hierarchy between the three terms.

    They were proposing that CFS should become the new Title term; BME should be the Inclusion term under CFS, and that PVFS would no longer be a Title term but would be listed under Synonym to CFS.

    Additionally, it was unclear what parent term they were proposing to list CFS and its associated terms under, because the terms weren't listed under "Other diseases of the nervous system" but in a sub linearisation, which may have been a "holding pen" pending a consensus decision.

    So the draft had looked like this in early 2013.
    Note that the asterisk at the end of BME denotes that, at that point, it was a specified inclusion term to CFS:

    Beta draft in early 2013:

    [​IMG]


    Then the terms disappeared altogether in the public version of the draft and remained absent for four years. It proved impossible to obtain clarification from ICD Revision, the Joint Task Force or Dr Robert Jakob of how their proposals for these terms now stood or when the terms would be put back into the Beta draft for stakeholder scrutiny and comment.

    Having been told by Dr Chute, who is a member of the Joint Task Force, that: "Evidently, there are plans to include these terms as index entries" and with the deadline for submitting proposals fast approaching, the concern was that possibly Dr Jakob was reluctant to clarify their intentions because the intention might now have been to retain CFS as the sole Title term but specify both BME and PVFS as Index terms only. Or perhaps, with the work group having disbanded before consensus had been reached for these terms and with no proposals to present to stakeholders, ICD Revision was floundering as to what to do with these terms, but were reluctant to admit this.

    My concern was that if they were going to propose making CFS the new Title term and demote PVFS and BME to the Index list (as Dr Chute had advised me), that if we proposed that PVFS should be retired or demoted to the Index, it might strengthen ICD Revision's resolve to also demote BME.

    So I considered that it would be a better strategy to propose both CFS and ME as coded for categories and assign a discrete, sequential code to each term, and place PVFS under ME, in the Synonyms list rather than suggest that PVFS become an Index term.

    Does that make better sense?
     
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  12. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    I've been liaising with various ICD Revision personnel since late 2009 and it has not been easy. I have engaged with ICD Revision as an individual stakeholder, in collaboration with other advocates and as adviser to a number of UK and EU patient organisations.

    I would not say that engagement has been any more fruitful for organisations, even when several orgs have collaborated in making joint approaches, than it has been as an individual. It makes a mockery of ICD Revision's claims to be an open and transparent development process that encourages the active participation of professional and lay stakeholders and stakeholder groups.

    Rather than give straight answers to requests for clarifications, the mantra trotted out by Dr Jakob and the Joint Task Force has been - stakeholders must engage via the Beta Proposal Mechanism by submitting proposals, commenting on existing proposals or submitting changes to existing proposals (even when there were no proposals to comment on). And that proposals will only be considered if submitted via the Proposal Mechanism - not direct to ICD Revision or WHO.

    If you are not very familiar with the Beta draft or with your own country's version of ICD-10, I would recommend that you approach German patient groups and sound them out. Or that you gather a small group of German patients and advocates, inform yourselves and work as a group.

    It will be essential that you register for access to the Proposal Mechanism.

    You won't see new proposals or be able to comment on them or submit proposals (if that is what the group decides it wants to do) if you don't have access. If you do submit proposals for changes, you will need to support these with references.

    Bear in mind that the deadline for proposals for consideration for the June 2018 release was reached on March 30.

    Once ICD-11 has been released, next year, all member states will need to evaluate the product, decide if and when they will aim for transition from ICD-10 to ICD-11 and then begin the process of preparing their health systems for transition. In the case of Germany, they will need to develop a modification of ICD-11.

    As I've said already, to what extent those countries that have their own versions of ICD will be able to modify ICD-11 is still being discussed. So it's impossible at this point to estimate in what year DIMDI will have an ICD-11-GM ready to implement. We do not know in the UK when the NHS will be ready to adopt and transition to ICD-11 - it could be four or five years, post release.

    Australia are likely to be early implementers; the US will need at least 6 years and probably longer to develop an ICD-11-CM. Canada has said it will be at least 2023 before it can transition to an ICD-11-CA.

    Once ICD-11 has released, next year, it will continue to evolve. It will be updated annually by a revision committee and the development platform will stay online for the submitting of further proposals.

    If you are concerned about the current structure of ICD-10-GM, then your concerns would need to be directed to DIMDI. I don't know whether there is a specific process for stakeholder engagement with DIMDI - you will need to look into that.


    If you are concerned about how the terms might change for a future ICD-11-GM, bear in mind that we do still do not know how the terms will be represented in the version of ICD-11 that is scheduled for release in June 2018.

    Our proposals have not yet been processed and they may be rejected in full or in part.

    The ICD-11 draft will need to be finalised by November/December 2017. Possibly ICD Revision will have reviewed our proposals before November - but time is getting tight. Possibly they will proceed with how the terms are currently listed; possibly they will release revised proposals between now and December or perhaps they will wait until the 2019 update to release new proposals - we simply do not know at this point - which is hugely frustrating.

    So at the moment, we cannot be certain what the June 2018 version will contain - or whether that will change again in 2019. Obviously this is not acceptable - but much of ICD Revision's MO has been unacceptable.

    By the way, DIMDI's Dr. Stefanie Weber is co-chair of the ICD Revision Joint Task Force.


    Not really.

    ICD-10-GM has CFS as the Title term and three inclusion terms, one of which is a term not used in the UK or currently in ICD-10 or in ICD-11.

    Whereas, we are proposing that CFS and ME should each be assigned a code, with PVFS under Synonyms to ME.


    As a non German resident who is not subject to, or familiar with your health system and the way that ICD-10-GM is used within your health system and by other agencies, and as I am not au fait with how ICD-10-GM is viewed by German patients, advocates and their clinical and researcher allies, I do not feel it would be appropriate for me to comment on the current structure for these terms.

    You need to be discussing this with German patients and their advocates and with German orgs. Ideally, they or a group you might gather together needs to put any proposals you might have either for ICD-11 or for a future ICD-11-GM out for consultation.

    Not clear whether you mean acting in relation to ICD-11 or in relation to ICD-10-GM/ICD-11-GM?

    If ICD-11, around 30 international orgs have publicly supported our proposal. If you mean acting in relation to ICD-10-GM, then I do not think advocates and patients from outside Germany would be best placed to involve themselves, and because your ICD-10-GM is specific to Germany.
     
    Last edited: Nov 1, 2017
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  13. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    Indeed.

    The Fink et al (2010) BDS construct is considered by its authors to have the ability to capture the somatoform disorders, neurasthenia, "functional symptoms" and the so-called "functional somatic syndromes" under a single, unifying disorder construct which subsumes CFS, ME, fibromyalgia, IBS, noncardiac chest pain, chronic pain disorder, MCS and some other conditions, and replaces them with a single diagnostic category - Bodily distress syndrome.

    The various so-called specialty "functional somatic syndromes" are considered by Fink and colleagues to be an artifact of medical specialisation and manifestations of a similar, underlying disorder with a common, hypothesised aetiology.

    This is Fink's aim and he has been lobbying for WHO to include it in ICD-11. They have rejected his request. He wants to get it into ICPC-3, as well.

    [​IMG]


    But for ICD-11, they have "Bodily distress disorder" - which despite the similar sounding term is close to DSM-5's SSD.
    BDD is a can of worms, too.


    For information on Fink's BDS and ICD-11's BDD see:


    Q7 of this PDF: https://dxrevisionwatch.files.wordp...osal-g93-3-q-and-a-april-2017-version-1-1.pdf

    The rest of the PDF may answer some of your Qs re ICD-11.


    See this submission by me calling for deletion of ICD-11's BDD:


    https://dxrevisionwatch.com/2017/03...oposed-new-category-bodily-distress-disorder/

    or in PDF if you prefer: https://dxrevisionwatch.files.wordpress.com/2017/03/bdd-submissionv3.pdf


    See this website: http://funktionellelidelser.dk/en/about/bds/

    for information on Fink's clinic and on BDS.


    If you have time and energy, this paper is worth reading:

    Syndromes of bodily distress or functional somatic syndromes - Where are we heading.
    Lecture on the occasion of receiving the Alison Creed award 2017. Fink, Per. Journal of Psychosomatic Research,
    Volume 97 , 127 - 130 http://www.jpsychores.com/article/S0022-3999(17)30445-2/pdf
     
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  14. Dx Revision Watch

    Dx Revision Watch Established Member (Voting Rights)

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    As we have been discussing Synonyms, a little more on Inclusions and Synonyms...

    Extracts from ICD-11 Reference Guide, draft July 2017:

    3.11.2 Inclusions


    Within the coded categories there are typically other optional diagnostic terms. These are
    known as ‘inclusion terms’ and are given, in addition to the title, as examples of the
    diagnostic statements to be classified to that category. They may refer to different
    conditions or be synonyms. They are not a sub-classification of the category. Inclusion terms
    are listed primarily as a guide to the content of the category, in addition to the definition.

    Many of the items listed relate to important or common terms belonging to the category.
    Others are borderline conditions or sites listed to distinguish the boundary between one
    subcategory and another. The lists of inclusion terms are by no means exhaustive.
    Alternative names of diagnostic entities (synonyms) are included and shown in the electronic
    coding tool and the Alphabetical Index, which should be referred to first when coding a given
    diagnostic statement.
     
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  15. Inara

    Inara Senior Member (Voting Rights)

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    Again, lots of thanks to you, Suzy!

    There is loads of information in there. Where do I start?

    First, contacting patient orgs and asking about any action regarding ICD-11, ICD-11-GM, ICD-10-GM. If nothing happens there (very probable), then I should find some people. And then? What information should we seek - apart from what you have already written - how to contact the "officials"? We could really learn from you!
    I see that registering on WHO's "beta platform" is mandatory.

    This Fink thing is a HUGE problem. I have heard about this bodily distress syndrome and laughed about it since it is ridiculous - although, of course, it's bloody serious. I didn't know he subsumes ME, FM, MCS and more under that.

    First, I will need to torture myself by reading his stuff. Second, I might ask an anti-psychiatry organisation if they know anything about that and if they have any proposals. I guess that will be negative.

    What is done in the UK against the BPS group? Maybe "we" (Germans) could connect and coordinate.

    We have one BIG problem in Germany: Most Germans are not known to be system fighters but to be good, calm obeyers and servants. It is really hard to find a bunch of people who would become active. And for going against BDS you will need more than a bunch.
    (Please, all the Germans here, take no offense! - Maybe this is a good time to post here, open a new thread and discuss what we can do against this Mr. Fink's intentions!)

    It will be necessary to contact MCS and FM patient groups, I guess.

    Can I somehow contribute something regarding ICD-11 and BDD? You said Mr. Fink handed in a proposal to add "BDS" to ICD-11 and that it was rejected, right?

    Can you guess how much time there is regarding Fink and ICD-11?
     
  16. Inara

    Inara Senior Member (Voting Rights)

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    @Dx Revision Watch
    Dear Suzy,

    may I use some of the contents here in a German speaking forum (Swiss with Germans and Austrian) with an ME section? I would maybe link to this thread and your website, too, if this is allowed. Maybe I can find one or two people who would join.
     
    Last edited: Nov 1, 2017
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  17. Inara

    Inara Senior Member (Voting Rights)

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    Citation from Q7 of https://dxrevisionwatch.files.wordp...osal-g93-3-q-and-a-april-2017-version-1-1.pdf

    This means, psychiatry has achieved a milestone of their plans to establish a very powerful system: They can give a medical diagnosis and ALWAYS a psychiatric diagnosis. There will be no clearness, no objectification and despotism. Unacceptable. It's a very bad direction the "therapeutical state" is taking. :(
     
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  18. Inara

    Inara Senior Member (Voting Rights)

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    Hi Suzy
    @Dx Revision Watch

    I have registered on the ICD beta draft webpage.

    If I choose to place a comment, is there something I should consider?
     
  19. Inara

    Inara Senior Member (Voting Rights)

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    If I wanted to contact BPS or BDS people and if I wanted to give reference to a few very good ME papers showing a medical illness, which ones would you choose?
     
    Last edited: Nov 2, 2017
  20. Inara

    Inara Senior Member (Voting Rights)

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    I see on your homepage that Henningsen is part of the BDS group - why doesn't THAT surprise me?!
     

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