International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Embracing Change - ME and the International Classification of Diseases

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 24, 2014.

  1. countryrockstar

    countryrockstar

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    Hi Suzy,
    Annette is also my M.P. so I guess we must live in a similar area I wondered if you had any experience with the renown Purbeck M.E. Clinic held at Wareham Hospital or the very sympathetic rheumatologist Dr Richards who is the specialist for that clinic?
    I also have a question for anyone who reads this entry and could give advice about their own experience with flu shots and reticent G.P.s. I have for the last 18 years suffered every November through to May with an extreme respiratory problem which starts with flu like symptoms but end up with extreme sinusitis. I had escaped this condition on three maybe four occasions always when a new G.P. or Locum gave me the flu shot, but more and more I am constantly told “your not on the list” this despite the N.H.S. Choices web pages saying your G.P. has discretion and can give you the shot, Has anyone else experienced this reticence when winter comes? What makes it worse is staff are always saying to me “I don’t know why they keep refusing you, we have it allocated to all pensioners, many who don’t bother so the doses just sit on the shelf till the date runs out and then they get put in the bin!” hope this gives you all food for thought.
    Bye For Now
     
  2. Bob

    Bob

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    @countryrockstar, if you can't persuade your GP to give you a free NHS flu shot, then anyone can pay to get flu shots privately either through your GP or at some pharmacies e.g. some Tesco pharmacies, for about £10/£15 I think.
     
  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Two recent posts on Dx Revision Watch

    On June 8, I sent a letter to Bedirhan Üstün (WHO/ICD Revision Coordinator), Cc’d to key ICD Revision personnel and the recently assembled ICD Revision Project Management Team, requesting an update on the status of proposals for these terms and their restoration to the draft:

    Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform:

    Letter to key ICD Revision personnel


    June 10, 2015

    http://wp.me/pKrrB-45z

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

    Update to Letter to key Revision personnel re Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform

    June 22, 2015

    http://wp.me/pKrrB-46A

    On June 8, I sent a letter to Bedirhan Üstün (WHO/ICD Revision Coordinator), Cc’d to key ICD Revision personnel and the recently assembled ICD Revision Project Management Team, requesting an update on the status of proposals for these terms and their restoration to the draft.

    On Friday, June 19, Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager) facilitated a conference call with myself and Dr Robert Jakob (WHO ICD classifications, ICD Revision Steering Group) in which Dr Jakob responded to my letter, having obtained a progress report from TAG Neurology.

    [​IMG]

    "Dr Jakob says he can be “crystal clear” that there is no proposal to classify the ICD-10 G93.3 legacy terms under the Mental and behavioural disorders chapter."

    For a summary of the main points from our discussions re the current status of proposals for the G93.3 ICD-10 legacy terms, see:

    http://wp.me/pKrrB-46A
     
    Last edited: Jun 24, 2015
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  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    On May 2, 2015, I submitted a referenced commentary via the ICD-11 Beta platform Comment facility for the consideration of the Topic Advisory Group for Mental Health (TAG Mental Health) and the sub-working group, ICD-11 Working Group on Somatic Distress and Dissociative Disorders (the S3DWG), which has specific responsibility for making recommendations to TAG MH on the revision of ICD-10's Somatoform disorder categories.

    As one needs to be registered with the Beta draft in order to read/make comments and submit proposals, I have published a copy on my site:

    Comment submitted in May 2015 to ICD-11 Topic Advisory Group for Mental Health re: Bodily distress disorder

    http://wp.me/pKrrB-465
     
    Last edited: Jun 24, 2015
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  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    In May, WHO quietly released a report by the external assessment contract holders on the status of the ICD revision process, its management and resources, the feasibility of meeting its goals and timelines, and its fitness for purpose.

    Among other measures, a further shift in the target date for WHA adoption from May 2017 to May 2018 has been proposed. At the end of June, ICD Revision is expected to release a revised project plan.

    The reviewers’ assessment and recommendations and WHO’s initial response to the report’s findings can be accessed here: http://wp.me/pKrrB-44N

    "A revised workplan will be formulated before the end of June and submitted for approval to the RSG-SEG. During 2015 the WHO secretariat will be strengthened in terms of project management, communication of progress and plans, documentation and transparency of decision-making and classification expertise, as recommended by the reviewers."
     
  6. Simon

    Simon

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    I'm afraid I don't even have the energy to read all your submissions but a grateful that @Dx Revision Watch is clearly engaging so thoughtfully, impressively and persistently with the laborious process.
     
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  7. Denise

    Denise Senior Member

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    Me too!
     
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  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Thank you, Simon and Denise.

    When ICD Revision was first launched in April 2007, the target date for presentation of ICD-11 for approval by the World Health Assembly had been 2011/12. This considerably underestimated the workload. The Timeline was shifted to 2014/15, then to May 2017. Currently ICD Revision is projecting May 2018. But it would not surprise me if there are further extensions to the Timeline.

    The Topic Advisory Group for Neurology that retains responsibility for these terms has been functioning for 6 years, now, since June 2009.

    Dr Jakob told me that in September, ICD Revision plans to post various materials relating to the development process on the WHO/ICD website for public scrutiny, this to possibly include rationales. Possibly also documents relating to the revision of the abridged Primary Care version.

    If TAG Neurology’s proposals for the G93.3 legacy terms are not ready for September release, then Dr Jakob projected their release towards the end of December.
     
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Last edited: Jun 29, 2015
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  10. Simon

    Simon

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    Do you think they might try to shuffle off mecfs here too?
     
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  11. Scarecrow

    Scarecrow Revolting Peasant

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    MUPS?
     
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  12. Scarecrow

    Scarecrow Revolting Peasant

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    In an ideal (read 'honest') world, that wouldn't bother me. It is what it is.

    But the baggage it would come with is disturbing.
     
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  13. worldbackwards

    worldbackwards A unique snowflake

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    In reality, no-one apart from us take G93.3 seriously anyway. I suspect we'd miss being able to brandish it about though.
     
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Simon, before I respond, a bit of an update to this proposed new Chronic pain section:

    Note that the proposed parent class Primary chronic pain is now proposed to be amended to Chronic primary pain, to align with the terminology that had been suggested in the Treede et al (2015) paper.

    If you are registered with the Beta draft, you will have access to the Proposals Mechanism. Via this, you can read the detailed proposals, rationales and literature references for most of these proposed new terms.

    So far, there are detailed proposals entered into the Proposal Mechanism for the parent classes in bold, below:


    Pain
    >>Chronic pain
    >>> Primary chronic pain (to be amended to Chronic primary pain)
    >>>> Mono-site primary chronic pains syndromes
    >>>> Multi-site primary chronic pains syndromes
    >>>>> Fibromyalgia (currently Definition/other Content Model parameters as per previous chapter location)

    >>Chronic cancer pain
    >>Chronic postsurgical or posttraumatic pain
    >>Chronic musculoskeletal pain
    >>Chronic visceral pain
    >>Chronic neuropathic pain
    >>>Causalgia
    >>Chronic headache or chronic orofacial pain


    In the Treede et al paper, it is proposed that nonspecific back pain ("back pain that is neither identified as musculoskeletal or neuropathic pain"), chronic pelvic pain, chronic widespread pain, fibromyalgia, and irritable bowel syndrome will sit under "Chronic primary pain" and that this category is "a new phenomenological definition, created
    because the etiology is unknown for many forms of chronic pain."


    So far, only Fibromyalgia has been relocated in the draft. (That change was made on May 5, 2015 but it could be revised.)

    Some categories proposed for this section will be secondary parented to their disease chapters.

    I have asked whether it is proposed to secondary parent Fibromyalgia to its original chapter, Diseases of the musculoskeletal system and connective tissue.

    IBS is currently listing in the Beta draft under its original location. It's unclear whether the current intention is for the addition of a discrete category for irritable bowel syndrome under Chronic primary pain, or whether the intention is for irritable bowel syndrome to be accommodated under Chronic visceral pain.

    Or whether the IASP proposal to locate IBS under this new Chronic primary pain category has already been rejected by ICD Revision or a decision over IBS has not yet been reached.

    I've asked for clarification of the most recent proposals for the location of irritable bowel syndrome within the classification.


    BTW, under the detailed description and criteria for Chronic pain is an optional specifier for Presence of psychosocial factors

    C) Presence of psychosocial factors

    Classify whether positive evidence of psychosocial factors is present:

    Psychosocial factors which contribute to the onset, the maintenance or exacerbations of pain or are a consequence of pain can be cognitive (e.g. catastrophizing, fear avoidance beliefs, worry/rumination, hypervigilance), behavioral (e.g. avoidance or endurance behavior, dysfunctional operant processes), emotional (e.g. fear of pain, injuries or illness progression, specific and general health fears, hopelessness/demoralization) or social (e.g. job strain, socioeconomic hardship, lack of social support).

    Code 1*: with psychosocial factors

    Code 2: without psychosocial factors

    Note*: Code 1 requires that evidence for the involvement of such factors is present


    I have copies of all the detailed descriptions published, so far, but they are a bit lengthy to post, here. I'll maybe archive them on my site in the next week or so and post links, here.

    I would advise everyone who is interested in the ICD-11 drafting process to register with the draft for increased access, as there is such a lot that I can that those who aren't registered don't have access to.

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

    @ Simon Do you think they might try to shuffle off mecfs here too?

    I doubt it.

    Since ME and CFS are not essentially defined as pain disorders or as chronic pain disorders, I don't see that ICD Revision could rationalize relocating one or more of the G93.3 legacy terms under this proposed Symptoms, signs Chronic primary pain section by creating discrete entries for these terms.

    As far as Fibromyalgia goes, there were already moves to redefine FM as chronic widespread pain.

    When I spoke to Dr Robert Jacob, there were no indications as to whether or where TAG Neurology might be considering relocating the G93.3 legacy terms. But I got the drift that possibly secondary parenting one or more of the terms under another chapter might be under consideration.

    I prefer not to speculate, but one possibility might be that they are considering leaving the terms where they are, under a new parent class or under an existing parent class (since "Disorders of brain" is retired for ICD-11), but secondary parenting one or more of the terms under the Symptoms, signs chapter, under a new or existing parent class.

    Or, relocating all three terms somewhere under the Symptoms, signs chapter but secondary parenting somewhere within the Neurology chapter. ICD Revision's 2010 discussions for the potential for a Multisystem disorders chapter or a Multisystem disorders Linearization appear to have been rejected.

    I just don't know, but I hope proposals will be released by September or December, latest.
     
    Last edited: Jun 30, 2015
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  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Yes, the proposed Chronic primary pain category within the Chronic pain section is essentially a MUPS section for chronic pain conditions (or what are being framed as chronic pain conditions).
     
    Last edited: Jun 30, 2015
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    I'd assumed that Simon meant in another part of the 'Symptoms, signs, clinical forms etc.....' chapter rather than under 'pain' specifically, but in a separate MUPS subsection.
     
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  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Can Simon clarify, please, whether he meant somewhere under Symptoms, signs chapter or specifically under this proposed new Chronic primary pain parent term?
     
  18. Simon

    Simon

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    Should have been clearer - meant "Symptoms, signs chapter" generally.
     
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  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    The ICD-11 Symptoms, signs, clinical forms etc chapter is here:

    http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1843895818

    Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified

    Definition
    Diseases can manifest in many ways and in different body systems. Such specific manifestation may be a reason for treatment or encounter, with or without identifying or addressing the underlying condition. The listed clinical forms allow to code such cases. These categories should be used in conjunction with a code from another chapter that identifies the underlying condition.

    The same applies to the laboratory findings, signs and symptoms that are listed here by organ system.

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

    The chapter is split up into:

    General symptoms, findings and clinical forms
    > General symptoms (which lists individual symptoms, including Fatigue, under which in the U.S. ICD-10-CM, Chronic fatigue >>Chronic fatigue syndrome NOS is listed)

    > Abnormal findings in specimens etc.

    then by lists of Organ systems.



    @ Scarecrow


    I'm not sure ICD Revision would consider creating a specific MUPS category under the Symptoms, signs chapter.

    For a start, the concept of "medically unexplained" has been eliminated for ICD-11. The defining characteristics and criteria for ICD-11's Bodily distress disorder within the Mental and behavoural disorders chapter are very similar to DSM-5's SSD. (Somatic symptom disorder is inserted under Synonyms to BDD.)

    Like SSD, ICD-11's BDD accommodates distressing, persistent single or multiple (unspecified) bodily symptoms, which can include pain. The diagnosis has been expanded to include symptoms of unexplained etiology or where a diagnosed general medical condition is causing or contributing to the symptoms.


    So there is already a diagnosis within the classification that subsumes MUPS and extends the diagnosis to include excessive psychobehavioural responses to "medically explained" symptoms.

    Dr Geoffrey Reed (Senior Project Officer and co-chair, TAG Mental Health) has told me that when the G93.3 legacy terms are restored to the draft, he would be happy to request exclusions under BDD. I have already got requests in via the Proposal Mechanism for exclusions for these terms under BDD and under Fatigue (was Malaise and fatigue in ICD-10).

    Bodily distress disorder
    is already excluded under Fatigue.

    But as I say, I would not rule out the potential proposal for location or secondary parenting of one or more of the three ICD-10 legacy terms under some new or existing parent class, within the Symptoms, signs chapter.

    That would bring ICD-11 more in line with ICD-10-CM. But out of whack with ICD-10-CA and ICD-10-GM (which have all three coded in Neurology, at G93.3).
     
    Last edited: Jun 30, 2015
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  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    OK, thanks for clarifying.
     
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