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EMEA Writes to World Health Organisation

Discussion in 'General ME/CFS Discussion' started by cirrus, Dec 20, 2016.

  1. cirrus

    cirrus

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    http://www.euro-me.org/news-Q42016-002.htm

    EMEA Writes to World Health Organisation

    The Disappearance, Continued Absence and Its Consequences of the Enforcement of the ICD-10 G93.3 Within the Linearization of the ICD-11 Public Beta Draft Version
    EMEA: PRESS RELEASE - For Immediate Release

    The European ME Alliance (EMEA) is a collaboration of 13 ME organisations in European countries who have the common aim of promoting biomedical research into Myalgic Encephalomyelitis and increasing awareness of this debilitating neurological disease.

    EMEA has written to the World Health Organisation (WHO) with the Alliance's concerns about planned revisions to the classification of ME.'

    Background:
    The current classification for Myalgic Encephalomyelitis (ME) in the WHO Classification of Diseases (ICD-10) is under section G93.3 and lists ME as a neurological illness.

    The WHO have set up a Joint Task Force to prepare for the 11th Revision of the International Classification of Diseases (ICD-11) and this is due to be ready by 2018.

    From the WHO web site [http://www.who.int/classifications/icd/revision/en/] -

    The Joint Task Force (JTF) is the steering group for ICD-11 version for Mortality and Morbidity Statistics (ICD-11-MMS). The JTF provides strategic and technical advice to WHO for the finalization of the ICD-11-MMS development. The input will draw on scientific advice, where recommended by the JTF or WHO. The primary focus of the JTF is to recommend the subset of the ICD-11 foundation that will be included as codes in the ICD-11-MMS, used for international reporting, as well as how to appropriately structure those codes for tabulation and aggregation. The JTF will also provide guidance and support for the development of the ICD-11-MMS reference guide, including mortality and morbidity coding rules, the use of post-coordination in the ICD-11-MMS, and the suitability of the product for use as a classification. The JTF may seek advice, as necessary, from any other project stakeholders, such as the RSG, the vertical TAGs, the WHO-FIC Network, or other identified experts.

    EMEA's letter to WHO is shown below.

    We will publish WHO's reply as soon as it is available.

    Further Information:



    http://www.euro-me.org/Documents/WHO/EMEA Letter to the WHO_ME-CFS_ICD-11_160818 (Amended) Dec 2016.pdf
     
  2. Jo Best

    Jo Best Senior Member

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    Excellent letter.
     
  3. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    I have advised EMEA that Dr B Üstün is retired from both ICD-11 and from WHO. Dr Üstün had led the ICD Revision process since 2007 and the linking of the WHO Classifications to IHTSDO’s SNOMED-CT.

    In 2015, he moved off ICD Revision and assumed a new role within WHO in "Big Data". He then retired from WHO, earlier this year. So he won't be overseeing the release of a (part completed and scaled back) ICD-11, in May 2018.
     
    Last edited: Dec 20, 2016
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  4. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    On December 15, I wrote to Robert Jakob, CCd to a number of key ICD Revision RSG and JTF personnel.

    To: Robert Jakob

    CCd to: Molly Meri Robinson Nicol, Anneke Schmider, Segolene Ayme, Stefanie weber, Christopher Chute, Linda Best

    15 December 2016

    Dear Dr Jakob,

    You may recall, in June 2015, we discussed an update on TAG Neurology's proposals for the three ICD-10 G93.3 legacy terms, via a conference call facilitated by Ms Schmider.

    During this call, you advised that you had discussed the status of proposals for these three terms with Dr Raad Shakir (Chair TAG Neurology) and you anticipated that TAG Neurology's proposals and rationales for these legacy terms would be posted in September 2015, or by December 2015, latest.

    It is now December 2016.

    TAG Neurology's proposals have still not been entered into the public version of the Beta draft for public and professional scrutiny and comment and to the best of my knowledge, no progress reports have been published on any ICD Revision platform or in any journal.

    These three terms have now been absent from the public version of the Beta draft for nearly four years, since the terms were removed from the public Beta browser, by TAG Neurology, in early 2013.

    Until TAG Neurology posts its proposals for these three absent ICD-10 terms, stakeholders are unable to scrutinize or comment on proposals and are thus disenfranchised from participation in the revision process.

    If ICD-11 is intended to be presented to WHA in May 2018, in whatever degree of completion, I assume at some point during 2017, the Beta draft facility for stakeholders to make proposals, comment on chapter locations, parent classes, Definitions and which other "Content Model" parameters are to be retained will be withdrawn.

    There remain considerable concerns amongst professional and lay stakeholders in ICD-11 that the delay in restoring these terms to the Beta draft will result in a very brief period remaining during which proposals can be reviewed and comments submitted. Stakeholders have already "lost" nearly four years of potential scrutiny and input.

    It would be helpful for stakeholders to be advised by what date proposals for these terms will be released.

    Can RSG, JTF and TAG Neurology please consult for an update on the status of proposals for these three legacy terms and provide a date by which TAG proposals and rationales for proposals will be posted?

    etc.

    -----------

    I also wrote to Dr Geoffrey Reed in relation to ICD-11 proposals for BDD, on December 17.
     
    Last edited: Dec 20, 2016
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  5. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Last edited: Dec 20, 2016
  6. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    In December 2014, I formally proposed, via the Beta Proposal Mechanism, that the three ICD-10 legacy terms are listed as Exclusions under Bodily distress disorder. This proposal cannot be considered until the terms have been restored to the draft.

    "Rejected: Exclusion terms must exist in the classification as entities to enable linking. Linda Best 2016-Nov-15 - 16:50 UTC"


    In July 2014, ICD Revision’s, Dr Geoffrey Reed (Senior Project Officer, Revision of Mental and behavioural disorders), stated (via email) that "there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders." This was reiterated by Dr Robert Jakob, in June 2015.

    Dr Reed said (in July 2014), "The easiest way to make this absolutely clear will be through the use of exclusion terms. However, I will be unable to ask that exclusion terms be added to relevant Mental and Behavioural Disorders categories (e.g., Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. At such time, I will do that happily."
    .
     
    Last edited: Dec 20, 2016
  7. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    The ICD-11 external work group with responsibility for the G93.3 ICD-10 legacy terms is known as the

    Topic Advisory Group (TAG) for Neurology


    At some point between now and March 2017, TAG Neurology will be expected to post its proposals and rationales for the G93.3 legacy terms in the Proposals section of the public version of the Beta draft.

    (ICD Revision and the various TAG chairs and managing editors are compiling the draft on a more complex drafting platform that isn't accessible by the public.)

    The public version of the Beta draft requires that new proposals, or revisions or refinements to existing proposals, are entered into the Proposal Mechanism on behalf of the TAG chairs and managing editors or proposed via the Proposal Mechanism by stakeholders. They are then reviewed by ICD Revision. Some proposals have been stuck in the "Submitted" stage for several years.

    Proposals are then marked according to their current status in the review process, for example:

    [​IMG]

    Once a proposal has reached the orange "Implemented" stage, the proposal (for example, to insert a new term, to add or refine a Definition text, to add a term under Synonyms or Exclusions, to change a Parent class, to list under a Secondary Parent etc) is then entered into the Beta Linearizations.

    The recommendations of the various external TAG work groups and sub working groups is advisory. It is ICD Revision Steering Group and the Joint Task Force that approves or rejects the TAG's proposals.


    In order to see the most recent proposals under review, to track their progress and to comment on them, clinicians, researchers, patient organizations, advocates and other classes of stakeholder need to register with the draft.

    If stakeholders intend to comment on any proposals, I suggest they register with the Beta draft, now, because time is running out and the draft will need to be finalized next year (currently end of March 2017).

    Some points to bear in mind:

    If you have registered with the Beta draft and are making comments or making proposals, ideally these need supporting with citations. The proposal and comment process is a formal process and not intended as a vehicle for activism or protest.

    The codes assigned to ICD-11 Beta draft entries will be quite different to those in ICD-10 as all chapters have undergone restructuring; there are also a number of new chapters for ICD-11.

    The codes assigned to terms change on a daily basis as new terms are added and chapters reorganized. If referring to a term use the term and its parent class, not the codes.

    For example, the EMEA's letter refers to class "9H8Y". The Diseases of the nervous system chapter is now numbered Chapter 8, so all the codes in that chapter now start with an "8" not "9".

    For ICD-11, there is the facility for terms to be "Secondary parented" under a second parent class or to a second chapter. The term is assigned a (single) unique code and the term displays under both the "Primary parent" and the "Secondary parent".

    For example, a term could be "Primary parented" under "Diseases of the nervous system" but have a "Secondary parent" listing under the new chapter "Diseases of the immune system".

    It is not out of the question that one or more of the G93.3 legacy terms may be proposed to be listed under more than one chapter or more than one parent class. Or that the hierarchy between the terms will be proposed to be changed for ICD-11 (as was the case in 2010 to 2013).

    The ICD-10 parent class "Other disorders of brain" (which contained several categories) is retired for ICD-11, so the terms will require a new parent class or classes.

    There are two Views in the Beta draft:

    The Foundation Component
    This is a collection of all ICD entities like parent classes and the diseases and disorders that are classified under them:

    http://apps.who.int/classifications/icd11/browse/f/en#/


    Mortality and Morbidity Statistics (MMS)
    This is a subset of the Foundation Component.

    http://apps.who.int/classifications/icd11/browse/l-m/en#/


    Some terms are listed only in the Foundation Component.

    One example is Fibromyalgia (proposed to be classified under a new Chronic pain category in the Symptoms and signs chapter) which displays in the Foundation Component but does not display in the MMS linearization.

    Some terms may only appear as Index terms in the Alphabetical Index. You won't be able to see the Index or Print versions (which are updated more or less daily) unless you are registered for the Beta, but index terms should also be listed under "Index terms" in the Foundation Component view or may appear listed in the Foundation Component under "Synonyms" to a term.
     
    Last edited: Dec 21, 2016
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  8. Daisymay

    Daisymay Senior Member

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    Thank you very much indeed Suzy and everyone else working on this x
     
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  9. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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  10. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    For information on the recommendations by the ICD-11 Somatic Distress and Dissociative Disorders Working Group (S3DWG) for a new category proposed to be called, "Bodily distress disorder (BDD)" for the ICD-11 core edition and information on the alternative proposals of the Primary Care Consultation Group for a construct it proposes to be called "Bodily stress syndrome (BSS)" please see Post #11 in this thread:

    http://forums.phoenixrising.me/inde...cally-unexplained-symptoms.48228/#post-793002

    The ICD-11 PHC is being developed in parallel with the core ICD-11 and is an abridged version of the Mental or behavioural disorders chapter for use, in some countries, in primary care and low resource settings.

    It is expected to comprise 28 of the "most common mental health disorders found in primary care". The PCCG is chaired by Prof Sir David Goldberg.


    Also:

    PubMed Comment to authors Gureje and Reed, in this post:

    http://forums.phoenixrising.me/inde...unexplained-symptoms.48228/page-2#post-795220
     
    Last edited: Dec 21, 2016
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  11. Jo Best

    Jo Best Senior Member

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    Thank you so much Suzy.
     
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  12. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Geoffrey Reed, January 2015, commenting via the Beta draft re the proposed use of the term, "Bodily distress disorder" (BDD) and the potential for confusion if the S3DWG's proposed construct is assigned a disorder name that sounds very similar to, and is already being used interchangeably with BDS - an operationalized but divergent construct and criteria set.

    "I agree that there is a potential for confusion with the Fink et al. construct, which is conceptually different. So, this is not ideal.

    "At the same time, there are reasons that the Working Group in this area was not happy with the term 'Somatic symptom disorder' and did not adopt it from DSM-5 proposals. Problems with this term include the fact that in the context of ICD it could describe a large majority of health conditions whose symptoms are, by definition, somatic. This was not an issue for DSM-5, as DSM-5 is only a classification of mental disorders.

    "However, it should be possible to arrive at some satisfactory terminology and I will discuss further with the Working Group." Geoffrey Reed 2015-Jan-11 - 09:37 UTC


    Note: Somatic symptom disorder was subsequently inserted into the Beta draft under Synonyms for proposed category, Bodily distress disorder.
     
    Last edited: Dec 21, 2016
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