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Good article on how draft for next WHO icd classification does not have ME under nervous system dis.

Discussion in 'General ME/CFS News' started by anniekim, Feb 11, 2014.

  1. alex3619

    alex3619 Senior Member

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    There are lots of places that the three are used interchangeably. I do not mean the specific category covered by the ICD. I mean the category being promoted by the psychogenic lobby. The ultimate category in ICD-11 may or may not reflect this, to a greater or lesser extent. Yet the general writing on BDS, BDD etc clearly shows the intentions of those promoting it.

    See for example: http://www.rcpsych.ac.uk/pdf/C Feinmann Slides.pdf
     
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  2. anniekim

    anniekim Senior Member

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    I take it that is good news? @alex3619 are you concerned that the psychs will somehow sneak in ME etc under the bodily distress disorders category? Though I think you can't have an illness under two different categories. Sorry getting confused. Or is it more as you have demonstrated that outside the ICD classfication it is clear that psychs are still trying for ME to come under BOdily distress disorder. Thank you
     
  3. Anne

    Anne Senior Member

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    Did anyone save the article before it got withdrawn? Could you post the text here or send me a message?

    About WHO on Twitter:

    As far as I understand it the worry was that they would take ME and CFS plus fibromyalgia off the WHO classification, while at the same time introducing the diagnosis Bodily Distress Disorder. Judging from Twitter, as I understand it that can still be happening - right? They have not yet stated that they are planning on keeping ME/CFS in the Neurological disease category (G93.3)

    Can anyone follow up with them?

    WHO ‏@WHO 8h@secretspartacus Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11
    WHO ‏@WHO
    @secretspartacus #ICD11 beta draft is a web platform for collaborative editing. It’s not final & not approved by WHO http://goo.gl/5FGiKx

    @secretspartacus Researchers, health-care providers are invited to comment, make proposals to #ICD11 beta draft http://goo.gl/NCkhRS
     
  4. alex3619

    alex3619 Senior Member

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    @anniekim , they are already doing it. You can't have two diagnostic codes, but you can remove the ME diagnostic code on a patient and replace it with a psychiatric diagnostic code, rediagnosing the patient. Having distinct codes in ICD-10 has not stopped them, and it never will.

    If CFS and ME do not have a specific code just yet, we have no idea where they will turn up. There are several possibilities. If there is no separate code for CFS and ME though, that could be a problem.

    Regardless what I expect to see is a continuation of current practices of diagnosing patients under functional disorders, including BDD when it comes out. There is too much latitude in clinical practice, which is intentional. Doctors need some freedom to operate. This is however subject to abuse.

    Patients diagnosed with discrete disorders have been rediagnosed against their will, incarcerated in psychiatric institutions, and forcibly treated. Insurances companies put their stamp on all this too. So does bureaucracy. Psychs have too much dangerous, unjustifed and potentially unethical power.

    The DSM decision making process is severely flawed. I do not know enough about the ICD process to comment definitively, except that I would be pleasantly surprised if its not also severely flawed.
     
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  5. filfla4

    filfla4 Senior Member

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  6. anniekim

    anniekim Senior Member

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    Thanks Alex for this helpful reply and overview of the whole situation
     
  7. Sparrow

    Sparrow Senior Member

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    I had noted that some people seemed upset about potential revisions, but they do not seem to be a particular problem to me. One of the articles circulating around seemed to imply that because Bodily Distress Disorder was being included that ME and CFS would be grouped under that heading, but as far as I can tell, the WHO is still classifying those as entirely separate things.

    Am I missing something?
     
  8. Anne

    Anne Senior Member

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    If the WHO are taking ME and CFS plus fibromyalgia out of the WHO classification, while at the same time introducing the diagnosis Bodily Distress Disorder, then I think we have a major problem.

    To feel safe, I'd need to know that they are keeping ME (plus the reference of CFS) in the G93.3 category.
     
  9. WillowJ

    WillowJ Senior Member

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    Somatic Symptoms Disorder, as far as I know, can be used as an add-on diagnosis. It can be added to ME, or to cancer, or to Lupus, or to bipolar disease, or whatever.
     
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Firefighting:

    A post titled "New ICD-11 name for ME/CFS does not exist" by Marc-A Fluks has been sent to Co-Cure and several other forums and lists.

    I have informed Marc that his post reiterates misleading information in the article by Penny Swift which has since been pulled and that WHO has issued a disclaimer with respect to FM, CFS, ME.
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    From Twitter on February 12

    WHO ‏@WHO
    @secretspartacus Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11
     
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  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes, that is correct. DSM-5's SSD can be applied to in the presence of any diagnosed disease, and the so-called FSSs.
     
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  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    See WHO statement on Twitter, above.

    And please, for a detailed report on BDD, BSS and also the G93.3 categories within the Beta see my two reports:

    Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft

    http://wp.me/pKrrB-3Gl

    and

    Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft

    http://wp.me/pKrrB-3IX


    Please also read this other thread:

    http://forums.phoenixrising.me/index.php?threads/im-a-journalist-writing-about-me-cfs.28165/page-3
     
  14. Anne

    Anne Senior Member

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    But the WHO haven't stated on Twitter that they are keeping the code G93.3 including ME, have they?

    That, to me, seems like the crucial issue. (Or am I interpreting this wrong?)
     
  15. alex3619

    alex3619 Senior Member

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    There are a number of possibilities on the fate of ME and CFS ICD codes. This probably not a complete list either.

    They might have removed them until after further review. Do recall the science in this area is changing rapidly. They have been more major advances in the biomedical research in the last seven years than in any ten or twenty year period prior to this.

    The might have removed them to put them somewhere else.

    There might be serious debate we do not see, about where they belong.

    They might intend to remove them entirely. CFS and ME would not be part of BDD, they would not exist. There would only be BDD. This would not contradict the twitter message.

    There might be people pushing for the BDD option, with furious debate behind the scenes.

    They might intend to let people know what is happening only after it is too late to do anything about it.

    It may be a typical bureaucratic snafu. CFS, ME, who cares, deal with it later.

    We lack sufficient information. There is cause for concern, but nothing really concrete to focus on.
     
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Alex, if you read the end of my report, you will see that I had listed many of the points that you make above:

    Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft

    http://wp.me/pKrrB-3IX


    Anne, all that WHO has stated in its very brief response via Twitter is that there is no intention to classify "FM, ME/CFS" in the mental and behavioural chapter (Chapter 05) for ICD-11.

    There has been no comment from WHO, as yet, on what their current intentions are for the classification of these three terms.

    Note that the neurological chapter (Chapter VI in ICD-10) is currently renumbered to Chapter 07 in ICD-11 Beta.

    Note also that whatever codes the three terms are proposed to be classified under for ICD-11, and whatever hierarchy is proposed, or whatever parent classes the terms would sit under, it is unlikely that the G93.3 code, per se, will be retained for ICD-11 in relation to these terms.

    All chapters have undergone significant reorganization for ICD-11 Beta and the "sorting codes" currently assigned (which in some cases change daily as chapters are reorganized) and the eventual codes assigned throughout the classification, will be different to the old coding system in ICD-10.

    Many more disease terms have been added, some terms are proposed to be retired or replaced with more recent medical terminology or located under new parent classes. Some parent classes, for example, ICD-10's "G93: Other disorders of brain," under which G93.3 and a number of other G93.x codes, have been removed.

    I can tell you that a number of patient organizations are in the process of submitting formal requests that ICD Revision issues a statement of clarification for the current absence of these terms from the Beta draft.

    They are also asking for clarification of current proposals for the classification of these ICD entities (an ICD entity is an ICD Title term which is assigned a code, a Definition and other Content Model descriptors, or an Inclusion Term, a Synonym, a Narrower Term, or an Exclusion Term).

    These was initiated, in some cases, after I had published my report on the absence of these terms from the draft on February 9, several days before Ms Swift's unfortunate media article.

    I also continue my quest for clarification.

    Suzy
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes, this is the case, Alex.

    But my point was that I was referring specifically to the use of the term "BDD" in the context of ICD-11 usage and in the context of the Creed, Gureje 2012 journal paper's usage of "BDD" for ICD-11 and I wanted to be clear about what context you were using it in.

    BDD outside of ICD-11 is indeed often used interchangeably with both BDS, and some instances, BSS, notably in New Zealand by Prof Tony Dowell who is on the PCCG workgroup.

    He has been pushing the BSS term, already, in presentations, despite the fact that it has no published definition and criteria and no validation.

    This is another source of confusion since only BDS has published criteria (Fink et al 2010).

    But BDD, as proposed by the WHO's SD3WG in their 2012 paper, had greater congruence with DSM-5's SSD construct than with Fink's BDS.

    DSM-5's SSD construct is a divergent construct to BDS (and Fink, Creed and Henningsen have said this in the book they published a couple of years ago on MUS).

    So it's a real mess, because as the proposals stood at 2012, it wasn't the case that the proposed ICD-11 version of BDD was close to Fink's BDS.

    It was closer to SSD.

    And the PCCG primary care group's BSS was the one that was drew heavily on Fink et al's BDS definition and criteria.

    (Except that they tacked on a couple of SSD-like behavioral responses to attempt to accommodate harmonization with SSD.)

    So based on the 2012 Creed, Gureje paper you cannot make the leap from ICD-11's BDD being equal to Fink's BDS.

    Because the only elements in its criteria requirement are the presence of persistent preoccupation with any bodily symptom(s) and several SSD like psychobehavioural responses (which are absent from the Fink BDS criteria). No symptom counts, no body system symptom clusters.

    So rather than equate ICD-11's Beta entry, BDD with Fink's BDS, Ms Swift should have been looking at the proposals of the primary care group, about which she had not informed herself.

    Also, the wording of the BDD Definition recently added is based on the Creed, Gureje paper. As you'll see from my site.

    So I hope Ms Swift now understands that this is a considerably more complex and nuanced issue than her article presented - but the info was there on my site for the taking.

    And here's another potential source of confusion.

    For the Primary care version of ICD-11 (to be known as ICD-11-PHC), an abridged version of the core ICD-11 classification, there are proposed to be 28 mental health disorder categories.

    This is what the PCCG group were proposing for the Primary Care version, in 2012:

    Proposed disorders for ICD-11-PHC

    Extract: Page 51, Table 2.5

    Dysphoric disorders:

    [...]
    13 Health anxiety
    14: PTSD

    Body distress disorders:

    15 Bodily stress syndrome [Replaces F45 Unexplained somatic symptoms]
    16 Acute stress reaction
    17 Dissociative disorder
    18 Self-harm

    [F48 Neurasthenia proposed to be eliminated for ICD11-PHC]


    ---------

    So the PCCG group have been using the term "Body distress disorders" as a disorder group section heading, not as a category term. For the category term, they were proposing "Bodily stress syndrome".

    Why? My guess is because unless their proposed criteria 100% mirrored Fink's BDS criteria, WHO could not call it BDS. And they certainly could not call it BDS if it included SSD-like behavioural responses as well as the Fink et al BDS requirement for symptom counts and symptom clusters from body systems.

    Now that the Lam et al paper is available for free, you will be able to see how similar the BSS construct was in 2012 to BDS model but how they had tacked on some SSD elements. They use some of the wording from the BDS published criteria, including:

    "If the symptoms are accounted for by a known physical disease this is not [BSS].”

    That is verbatim Fink BDS.

    Yeah, I had this presentation on my site last year. This also uses BDD and BDS interchangeably.

    The information in Slide 14 was already out of date when the slides were put together. Slide 14 has


    Body distress disorders

    16 Bodily distress syndrome (new was unexplained somatic complaints)
    17 Health preoccupation (new)
    18 Conversion disorder (was dissociative disorder)

    ---------

    That was from a 2011 version of the draft for ICD-11-PHC. Prof Goldberg confirmed to me, himself, that by 2012, the list I have pasted in blue above had superseded the list directly above that Feinmann has used. Note also that "Health preoccupation" was superseded by "Illness anxiety" but it is "Health anxiety" that is used in the Lam et al 2012 paper. (In the Beta draft, they are still using Hypochondriasis but have Illness anxiety as an Inclusion term.)

    Why did they change it from "Bodily distress syndrome" to "Bodily stress syndrome"?

    Rosendal is on the PCCG group. I suspect that, as I say, ICD-11 could not use the term BDS unless Fink et al gave permission and unless it was a very close mirror of BDS, as the criteria are published.

    Read the Lam paper and it is pretty close - but the symptom counts may be different, and because it had SSD like elements, too, it cannot be considered a "pure" or near "pure" Fink BDS construct.

    So these are the terms in play:

    1. Somatic symptom disorder (DSM-5's category term, a term which SSD Work Group, Creed, does not like and which WHO in any case could probably not use unless APA were prepared to waive copyright/intellectual property rights on its disorder criteria, out of which it derives income). Published criteria set for SSD, 2013.

    2. Body distress disorders (Primary Care Consultation Group's proposal for a disorder group section name, under which are listed several unrelated disorders.).

    3. Bodily stress syndrome (Primary Care Consultation Group's proposal for a disorder name that in 2012 had much in common with Fink's BDS but with some tacked on elements from SSD, in order to facilitate a degree of "harmonization."). No published and operationalized criteria for BSS.

    (But SSD and BDS are divergent constructs - so a mash-up between BSS and SSD is problematic.)

    4. Bodily distress disorder (S3DWG group's preferred disorder name that is entered into the Beta - but in 2012 more like SSD than BDS). No published and operationalized criteria for BDD.

    then

    5. Fink et al's 2010 "Bodily Distress Syndrome" which does have published criteria and is already in use in clinical and research settings in Denmark.

    Suzy
     
    Last edited: Feb 14, 2014
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  18. anniekim

    anniekim Senior Member

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    @Dx Revision Watch this is a very useful summary of the current situation. Would you mind if I quoted it on a Facebook thread? If not, no problems. Whatever you are ok with. Many thanks
     
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ anniekim

    Yes, you may quote from any of my posts in this thread or in the sister thread. You may also quote the links for (or extracts from) my two key Dx Revision Watch posts:

    Between a Rock and a Hard Place etc http://wp.me/pKrrB-3Gl

    Update on ICD-10 G93.3 etc http://wp.me/pKrrB-3IX

    Here is an ICD-11 Skinny for you, as well:



    Suzy C's 12 point Skinny on ICD-11:


    1. PVFS, BME, CFS are not currently displaying in public version of Beta drafting platform.
    2. WHO/ICD asked to explain reason for current absence and to issue statement of clarification.
    3. Feb 12: WHO/ICD state via Twitter: "Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11".
    4. But WHO/ICD yet to clarify intent for PVFS, BME, CFS classification in terms of chapter location, parent class, hierarchy, definition(s) etc.
    5. Two separate work groups are advising ICD on revision of Somatoform Disorders section.
    6. In 2012, two sets of emerging proposals are published - one for Bodily distress disorder (BDD) and one for Bodily stress syndrome (BSS).
    7. In 2012, S3DWG (Gureje, Creed group) draft BDD proposals were for SSD-like psychobehavioural criteria [1].
    8. In 2012, PCCG (Goldberg Primary Care group) draft BSS proposals drew on Fink BDS-like construct/criteria plus some SSD-like psychobehavioural responses tacked on (clunky mash-up between two divergent constructs) [2].
    9 Definition for BDD recently inserted into Beta drafting platform based on wording from Creed, Gureje BDD paper [3].
    10. Without field test protocol, full disorder description, criteria, inclusions, exclusions, differential diagnoses etc, there is insufficient information in the Beta draft to determine that in the context of ICD-11 usage, "BDD = Fink BDS construct".
    11. Field testing of new proposals to take place over next two years. Not currently known which construct and criteria is being progressed to field tests, or whether S3DWG and PCCG have reached consensus.
    12. ICD-11 Beta is a work in progress, updated daily, not finalized, subject to field test evaluation, not approved by ICD Revision or WHO.


    References for Suzy C's 12 point Skinny on ICD-11:

    1. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

    2. Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract Feb 2013 [Epub ahead of print July 2012]. http://www.ncbi.nlm.nih.gov/pubmed/22843638 [Full text free]

    3. ICD-11 Beta drafting platform public version: Bodily distress disorder:
    http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1472866636

     
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  20. anniekim

    anniekim Senior Member

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    Thanks Suzy, very helpful
     

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