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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 Guest 77, May 4, 2018.

  1. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I thought Bodily distress disorder was mostly intended to replace somatoform disorders (F45.0) and neurasthenia (F48.0) in ICD-10.
     
    Last edited: Jan 20, 2020
  2. Sarah

    Sarah Senior Member (Voting Rights)

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    I just wanted to add my thanks to you and Mary Dimmock, @Dx Revision Watch. As others have said, it must've taken an incredible amount of work and perseverance, and the precise, detailed updates have also been much appreciated. Thank you.
     
  3. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    Yes it is.

    BDD subsumes and replaces most of the ICD-10 Somatoform disorders between F45.0 and F45.9, and F48.0 Neurasthenia.

    There is no ICD-10 category "Medically Unexplained Symptoms".

    I had no input into AfME's report and if a draft had been run past me, I would have asked for this to be amended.
     
    Last edited: Jan 22, 2020
  4. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    In the Diagnostic and management guidelines for mental disorders in primary care : ICD-10. Chapter 5, Primary care version. World Health Organization (1996) aka the "ICD-10 PHC": https://apps.who.int/iris/handle/10665/41852

    https://apps.who.int/iris/bitstream/handle/10665/41852/0889371482_eng.pdf

    which contained around 25 common mental disorders and no general medical diseases or conditions, the corresponding disorder category to the core ICD-10 Somatoform disorders block was known as:

    F45 Unexplained somatic complaints

    Prof Sir David Goldberg, who chaired the working group for the ICD-10 PHC and who also led the PCCG working group for its replacement, ICD-11 PHC, sometimes refers to F45 Unexplained somatic complaints as "medically unexplained symptoms."
     
    Last edited: Jan 20, 2020
  5. pteropus

    pteropus Senior Member (Voting Rights)

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    thank you - a magnificent achievement, using a huge amount of knowledge & dogged persistence.

    i'm crying, because this will allow thousands/millions of people to be saved from unnecessary harm.
     
  6. Nellie

    Nellie Senior Member (Voting Rights)

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    I am in awe of all that you have achieved. Thank you Suzy.
     
  7. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    Also crucial is exclusion of PVFS, BME and CFS under the ICD-11 PHC's proposed "Bodily stress syndrome" (BSS), which is conceptually different to the core ICD-11's BDD disorder construct.

    But the ICD-11 PHC is being developed away from the public domain and has no mechanism for public stakeholder review, comment and input.

    However, persuading WHO of the necessity for exclusions for these terms under the core ICD-11's BDD has set a precedent decision which may potentially assist with achieving specified exclusions under ICD-11 PHC's proposed BSS or specific listing under "Differential diagnosis."
     
    Last edited: Jan 20, 2020
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  8. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    https://academic.oup.com/fampra/article/30/1/76/543741
    PDF: https://watermark.silverchair.com/cms037.pdf

    Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study T P Lama, D P Goldbergb, A C Dowellc , S Fortesd, J K Mbatiae , F A Minhasf and M S Klinkmang


    This 2012 emerging proposals paper from the ICD-11 PHC working group listed only the following somatic diseases under "Differential diagnosis" (see p11, Appendix 2):

    Differential diagnosis

    • Consider physical disease with multiple symptoms, e.g. multiple sclerosis, hyperparathyroidism, acute intermittent porphyria, myasthenia gravis, AIDS, systemic lupus erythematosus, Lyme disease, connective tissues disease​
     
    Last edited: Jan 20, 2020
  9. Simon M

    Simon M Senior Member (Voting Rights)

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    Seriously, how do you dig out this information, let alone grapple with it? It is so complex/mind-numbing, yet also so important. Thanks for your continuing vigilance and work.
     
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  10. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    Thank you, Simon M.

    a) I don't have ME, myself (I'm a carer).
    b) I don't need to work and I don't have heavy carer duties - so I have the time and energy to do this type of work.
    c) I've been steeped in ICD-11 and other classification and terminology systems since around 2008 and it's the raison d'être for my Dx Revision Watch website.
    d) I'm extremely focused and enjoy researching and obtaining information.
    e) I'm an elephant and have a good memory.

    But...I am supposed to have retired.
     
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  11. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    I have updated my document "ICD-11 Proposal Mechanism, status of processed proposals" to reflect the WHO's recent implementation of the addition of exclusions for PVFS, ME and CFS under Bodily distress disorder.

    A PDF of document v5, which includes a link for the Rationale for this proposal, can be downloaded at:

    https://dxrevisionwatch.files.wordpress.com/2020/01/outcome-of-icd-11-processed-proposals-v5-1.pdf

    ICD-11 Proposal Mechanism, status of processed proposals at 17.01.20 v5


    [Edited to attach PDF]


    Edited 25/01/20 to also add:


    I have also updated the PDF that went out in the January edition of the ME Global Chronicle which clarifies the classification of PVFS, BME and CFS in ICD-11 to reflect the WHO's approval of my December 2019 proposal:

    Update on classification of PVFS ME CFS for ICD-11 v2

    new URL for updated v2:

    https://dxrevisionwatch.files.wordp...assification-of-pvfs-me-cfs-for-icd-11-v2.pdf
     

    Attached Files:

    Last edited: Jan 25, 2020
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  12. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    This is such a big milestone in your efforts, how are you rewarding yourself? (My wee brain wants to say 'shoes'...)
     
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  13. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    LOL...ordered, and I've already got one pair of these...


    [​IMG]


    Thank you Scott, and all of you who have posted such kind messages in response to this development with ICD-11.

    The addition of exclusions under BDD which can be seen implemented already in the orange Maintenance platform isn't expected to display in the blue ICD-11 MMS Implementation platform until the next annual release.

    The current release is Version: 04/2019. I anticipate another release at some point this year, but it's not clear from the Reference Guide when WHO expects to post the 2020 release. The Summary Report of the WHO-FIC Network Annual Meeting, which was held in Banff, last October, will likely give an indication of the ETA of the posting of the next annual release, but this report is not available yet.

    Suzy
     
    Last edited: Jan 21, 2020
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  14. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Suzy, this is remarkable. Thank you for your tremendous persistence and incredible knowledge to get this done.

    And to others who thanked me - all the credit goes to Suzy for making this happen. I didn't help with this one.
     
    Last edited: Jan 21, 2020
  15. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    @Michiel Tack

    AfME has edited its report (appended) from:

    to:

    https://www.actionforme.org.uk/news/update-on-me-in-who-latest-disease-classification

    and also removed three references to Mary.


    Original version:

     
    Last edited: Jan 22, 2020
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  16. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    You are correct - there is no concept term for "Persistent physical symptoms (PPS)" per se, in ICD-11, nor a concept term for "Medically unexplained symptoms" - either as Preferred Concept Title terms, or specified as Inclusion terms, Synonyms terms, or as Index terms.

    The Synonyms terms under Concept Title: Bodily distress disorder [Ed: backward mapped in the ICD-11 to ICD-10 Mapping Tables to ICD-10 F45] are:

    somatoform disorders [Ed: also backward mapped to ICD-10 F45]

    Somatization disorder
    Somatic symptom disorder
    Briquet’s disorder
    polysomatising disorder
    polysomatizing disorder
    multiple psychosomatic disorder​

    These terms listed under Synonyms are all assigned to the ICD-11 6C20.Z Bodily distress disorder, unspecified code. (The XXXX.Z codes are known as "Residual" codes).

    I have a copy of the ICD-11 to ICD-10 Mapping Tables and will establish which ICD-10 code these Synonyms terms have been backward mapped to and insert later in that dried blood colour.


    There is a SNOMED CT Terminology Concept: Medically unexplained symptoms which is exclusive to the SNOMED CT UK Edition and a SNOMED CT Concept: Medically unexplained symptom in the International Edition, the UK Edition, and the various other national editions.

    (In the UK Edition, the Medically unexplained symptoms term (SCTID: 887761000000101) is mapped to ICD-10 R68.8 Other specified general symptoms and signs - not to F45 or to an F45.x code.



    As for the implications for IAPT - difficult to say at this stage.

    At the moment, my understanding is that in the absence of a specific ICD-10 code for the term "Medically unexplained symptoms", IAPT uses ICD-10 F45.x codes.

    Although I think IAPT has ceased using an F45.x code for Fibromyalgia (there are posts about IAPT's use of ICD-10 codes on the other forum, in the ICD-11 thread, which note this change for Fibromyalgia).



    The ICD-11 code sets don't come into use until after January 01, 2022.

    NHS Digital has yet to issue even a tentative timeline for projected implementation of ICD-11 in NHS England. But it's anticipated to be several years before NHS England will be sufficiently prepared to be in a position to retire ICD-10 as its mandatory classification system and migrate its health systems to ICD-11.

    In the meantime, the mandatory classification system for use in English NHS remains ICD-10 5th Edition (Implemented April 2016) and the mandatory terminology system for use in primary care settings at the point of care remains SNOMED CT UK Edition. From 2020, SNOMED CT is planned to become the mandatory terminology system at the point of care for all secondary care, dental and mental health settings, too.

    SNOMED CT can automatically map a SNOMED CT concept term to its nearest ICD-10 equivalent code.

    If IAPT is still running by the time ICD-11 is implemented in England and continues to require the assigning of an ICD code for eligibility, data collection, statistical analysis etc. potentially, IAPT might make use of the Bodily distress disorder code (which now has excludes for the 8E49 PVFS; BME; and CFS terms) since the F45.x legacy categories will no longer exist in the ICD classification, other than as "Residuals" and there is no "Medically unexplained symptoms" term in ICD-11 it could deploy, in lieu of an F45 code. (BDD does not require that the symptoms are "medically unexplained" - the symptoms can be "medically unexplained" or they can be associated with, or exacerbated by a diagnosed general medical disease or condition.)


    Edited to add:
    In the ICD-10 to ICD-11 Forward Mapping Tables, most of the ICD-10 F45 to F45.9 categories, other than F45.2 Hypochondriacal disorder, are forward mapped to the ICD-11 Residual code: 6C20.Z Bodily distress disorder, unspecified.

    The terminal letter Y is reserved for the residual category 'other specified' and the terminal letter Z is reserved for the residual category 'unspecified'.

    In the blue Implementation browser and the orange Maintenance browser, these 'other specified' Y ending codes and 'unspecified' Z ending codes appear at the very end of category blocks in brown.

    For example, at the end of the Other disorders of the nervous system category block are listed:


    8E4Y Other specified disorders of the nervous system
    8E4Z Other disorders of the nervous system, unspecified
     
    Last edited: Jan 25, 2020
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  17. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    I did this series of Tweets and annotated screenshots for Twitter today and thought I'd drop them here as well:

    Code:
    https://twitter.com/dxrevisionwatch/status/1221057488809840645
    @dxrevisionwatch


    1 For anyone unclear how PVFS, ME and CFS are classified and coded in the WHO's unmodified ICD-10 Version: 2016:

    The G93.3 "Concept Title" is Postviral fatigue syndrome.

    Benign myalgic encephalomyelitis is an Inclusion under Postviral fatigue syndrome and is coded G93.3.

    [​IMG]



    2
    In the WHO's unmodified ICD-10, Chronic fatigue syndrome is included in the ICD-10 Alphabetical Index and is indexed to the G93.3 code.

    ICD-10 contains no definitions or descriptive texts for any of the PVFS, BME or CFS terms.

    [​IMG]


    3
    Exclusions in the WHO's unmodified ICD-10:

    G93.3 is excluded from F48.0 Neurasthenia and its inclusion, Fatigue syndrome.

    G93.3 is also excluded from R53 Malaise and fatigue.


    4
    For anyone unclear how PVFS, ME and CFS are classified and coded in the WHO's forthcoming ICD-11:

    The ICD-11 "Concept Title" remains Postviral fatigue syndrome.

    The new ICD-11 code is 8E49.

    BME and CFS are both specified as Inclusion terms and both assigned the 8E49 code.

    [​IMG]

    5 There are 14 terms including "myalgic encephalomyelitis" and "ME - [myalgic encephalomyelitis]" listed under Synonyms and Index terms.

    All 14 terms are assigned the 8E49 code. The 8E49 code is mapped in the ICD-11 Mapping Tables directly to ICD-10 G93.3.


    6
    For ICD-11, there is a field for Description texts for all general medical diseases/conditions - not just for mental disorders.

    Not all diseases or disorders have Descriptions entered.

    ICD-11 contains no definitions or Description texts for any of the PVFS, BME or CFS terms.


    7
    Exclusions in ICD-11:

    MG22 Fatigue is specified as an exclusion under 8E49.

    (This MG22 Fatigue category is "R53 Malaise and fatigue" in the WHO's unmodified ICD-10).

    8E49 PVFS; 8E49 BME; and 8E49 CFS are specified as exclusions under MG22 Fatigue:

    [​IMG]


    8 On January 17, the WHO approved my December proposal for adding exclusions for 8E49 PVFS; 8E49 BME; and 8E49 CFS under the new ICD-11 Mental disorder category, 6C20 Bodily distress disorder.

    Bodily distress disorder subsumes and replaces most of ICD-10's F45 Somatoform disorders, and F48.0 Neurasthenia.

    These approved exclusions under Bodily distress disorder already display in the orange Maintenance platform and should be incorporated into the blue Implementation platform later this year, when the 2020 release is published.

    Member States can begin using the ICD-11 code sets for data reporting from January 01, 2022, when their health services have implemented ICD-11. It is expected to take Member States several years to prepare for migration to the new edition.

    [​IMG]



    Sources:

    1 ICD-10 5th Edition Version: 2016:
    https://icd.who.int/browse10/2016/en#/G93.3

    2 ICD-11 Orange Maintenance Browser:

    ICD-11 Foundation Component:
    8E49:
    https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/569175314
    6C20: https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/767044268
    MG22: https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/1109546957

    ICD-11 (Mortality and Morbidity Statistics):
    8E49:
    https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314
    6C20: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268
    MG22: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/1109546957

    3 ICD-11 Blue Implementation Browser Version 04/2019:
    8E49:
    https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314
     
    Last edited: Jan 27, 2020
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  18. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    Comment in response to WAMES brief report re recent update on ICD-11:

    Twitlonger: http://tl.gd/n_1sr4kdh


    Comment in response to WAMES brief report re update on ICD-11:

    https://wames.org.uk/cms-english/me-cfs-no-longer-classified-as-bodily-distress-disorder-bdd/

    January 27, 2020

    Thank you WAMES for highlighting this recent development for ICD-11 and for your kind words. I'd like to take this opportunity to provide a little more context:

    In ICD-10, there isn't a category, as such, called "Medically unexplained symptoms (MUS)". But most of the categories in the ICD-10 F45 Somatoform disorders block incorporate the concept of "medically unexplained symptoms".

    The IAPT service makes use of the F45 codes as there is no specific ICD-10 code for "MUS".

    Most of the ICD-10 Somatoform disorders categories between F45.0 and F45.9 have been replaced for ICD-11 with the new single category, "Bodily distress disorder (BDD)" with Mild; Moderate; and Severe specifiers.

    ICD-10's F48.0 Neurasthenia and its inclusion term, Fatigue syndrome, are also subsumed and replaced by this new "Bodily distress disorder (BDD)" category.

    ICD-10 has an exclusion for the G93.3 terms under F48.0 Neurasthenia which redirects the coder or clinician to the G93.3 listing.

    The NHS Digital publication: "National Clinical Coding Standards ICD-10 5th Edition" contains this advisory note for coders and clinicians in relation to F48.0:

    https://dxrevisionwatch.files.wordpress.com/2019/04/clinical-standards-5th-edition.png

    [​IMG]

    But this exclusion for the ICD-10 G93.3 terms wasn't carried forward for the draft of ICD-11 and neither was the existing exclusion for the ICD-10 G93.3 terms under R53 Malaise and fatigue - so both these issues needed addressing.

    In November 2018, the WHO decided that for ICD-11, the G93.3 legacy terms would be retained in the Diseases of the nervous system chapter as following an extensive review, they had determined that "currently there is no evidence to suggest a better place".

    They also rejected a proposal submitted by Dr Tarun Dua, on behalf of the Neurology working group, that CFS and ME should be removed from Diseases of the nervous system and reclassified under the Symptoms, signs chapter, as a child of "Symptoms, signs or clinical findings of the musculoskeletal system".

    These decisions were supported by the ICD-11 Medical and Scientific Advisory Committee (MSAC) and the WHO-FIC Classification and Statistics Advisory Committee (CSAC).

    So PVFS; (B)ME and CFS remain under the Neurology chapter for ICD-11, with PVFS retained as the "Concept Title". BME and CFS are both specified as Inclusions under 8E49 PVFS and take the 8E49 code.


    The new ICD-11 category, "Bodily distress disorder" is very similar to the DSM-5's "Somatic symptom disorder (SSD)".

    Both potentially capture patients who might previously have been given a diagnosis of one of the F45 Somatoform disorders. But they can also be applied to some patients with chronic, distressing symptoms associated with a diagnosed general medical disease and condition, and to some of those diagnosed with one or more of the so-called "functional somatic syndromes".

    So for BDD, the symptoms can be "medically unexplained" or a general medical disease or condition may be causing or contributing to the symptoms.

    For BDD, it is not the nature of the symptoms or their aetiology that is the focus, but whether the patient's response to their chronic, distressing symptoms is perceived as "excessive attention" or "maladaptive"; or in the case of a diagnosed general medical condition, if "the degree of attention is clearly excessive in relation to [the disease's] nature and progression".

    It can apply to patients with chronic, multiple symptoms or complaining of a single chronic symptom, like pain or fatigue.

    Potentially, patients diagnosed, for example, with cancer, angina, diabetes, MS, ME, CFS, Parkinson disease, rare or difficult to diagnose diseases, especially those that present with multiple symptoms, could attract an additional mental disorder diagnosis of "Bodily distress disorder" - if the clinician considers the patient also meets the "Bodily distress disorder" disorder description. Or they could be at risk of being misdiagnosed with "Bodily distress disorder".

    Additionally, the term "Bodily distress disorder" has been used since 2007 interchangeably for the differently conceptualised Fink et al (2007, 2010) "Bodily distress syndrome (BDS)" which is already in use in Denmark and beyond, in both research and clinical settings.

    Academics, researchers and clinicians are already confusing and conflating ICD-11's "Bodily distress disorder" with the Fink et al "Bodily distress syndrome (BDS)", under which diagnostic construct, Fink and his colleagues subsume and replace CFS, ME, IBS and Fibromyalgia under a single, unifying "BDS" disorder.

    Psychiatrists based in the UK are already authoring chapters in books for international paediatric guidelines recommending that children and young people with a diagnosis of ME, CFS where there is not evidence for a viral onset should be considered for a diagnosis of "Bodily distress disorder".

    So it has been crucial to secure exclusions under "Bodily distress disorder" for the PVFS; (B)ME and CFS category terms, as this patient group is one of a number of patient groups that will be particularly vulnerable to misapplication of this new ICD-11 category.

    (Exclusions for the 8E49 terms under ICD-11's MG22 Fatigue were also submitted for and secured in 2017 and 2019.)


    For a PDF copy of the Rationale submitted in support of my Proposal for addition of exclusions for the 8E49 terms see:

    Rationale for Proposal for exclusions under BDD, December 02, 2019:
    https://dxrevisionwatch.files.wordpress.com/2020/01/rationale-bdd-exclusions-december-02-2019-1.pdf

    For a bite-sized overview of the coding of the 8E49 terms in ICD-11, plus annotated screenshots see:

    Post #80 on Phoenix Rising Forum:

    Updates on ICD-11 and other classification and terminology systems:
    https://forums.phoenixrising.me/thr...terminology-systems.59088/page-4#post-2255295

    or see Post #377 on S4ME forum:

    Updates on ICD-11 and other classification and terminology systems:
    https://www.s4me.info/threads/updat...-terminology-systems.3912/page-19#post-232494

    For a more detailed overview of the coding of these terms in ICD-11, see the report that was included in the January 2020 edition of the ME Global Chronicle:

    Update on classification of PVFS ME CFS for ICD-11 (v2 updated 25/01/20):
    https://dxrevisionwatch.files.wordp...assification-of-pvfs-me-cfs-for-icd-11-v2.pdf



    Finally, several additional chapters have been added for ICD-11 and the coding structure and chapter numbering has been re-organized.

    For ICD-11, Chapter V Mental and behavioural disorders becomes Chapter 06 Mental, behavioural or neurodevelopmental disorders.

    Chapter VI Diseases of the nervous system becomes Chapter 08 Diseases of the nervous system, and between these renumbered chapters, a new chapter called: 07 Sleep-wake disorders has been inserted.

    I hope your group members and your wider readership will find this additional context helpful.

    Suzy Chapman, Dx Revision Watch
     
    Last edited: Jan 27, 2020
  19. Louie41

    Louie41 Senior Member (Voting Rights)

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    Suzy, in my book you are probably the biggest hero in the world of ME. Your boots show it. Thank yous beyond measure!
     
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  20. Guest 77

    Guest 77 Senior Member (Voting Rights)

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    Gosh, Louie41, thank you for your kind and exuberant message. (PS: when you are only 5 feet tall, you need big boots.)
     
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