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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. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    I continue to check the ICD-11 Beta draft Foundation Component view and Joint Linearization for Mortality and Morbidity Statistics view most days.

    Today, I note a change.

    In the Foundation view, under

    Bodily distress disorder had sat Severe bodily distress disorder.

    This has very recently been changed:

    Under Bodily distress disorder its Child category: Severe bodily distress disorder has now been removed.

    Re-inserted is Somatization disorder as a child category.


    The Definition for re-inserted Somatization disorder is the F45.0 legacy definition from ICD-10 and is cross referenced to it.

    With no user Change Histories visible in the public version of Beta draft, it is not possible for stakeholders to track changes or rationales for this recent change.

    The Definition for parent code Bodily distress disorder remains the same text that I reported on, on my site, on January 29, which is:

    "Bodily distress disorder is characterized by high levels of preoccupation regarding bodily symptoms, unusually frequent or persistent medical help-seeking, and avoidance of normal activities for fear of damaging the body. These features are sufficiently persistent and distressing to lead to impairment in personal, family, social, educational, occupational or other important areas of functioning. The most common symptoms include pain (including musculoskeletal and chest pains, backache, headaches), fatigue, gastrointestinal symptoms, and respiratory symptoms, although patients may be preoccupied with any bodily symptoms. Bodily distress disorder most commonly involves multiple bodily symptoms, though some cases involve a single very bothersome symptom (usually pain or fatigue)."

    At one point in the draft, the three new proposed terms that were envisaged to replace or subsume 6 of the ICD-10 SDs plus F48.0, were listed like this:

    05 Mental and behavioural disorders


    9R0 Mild bodily distress disorder
    9R1 Moderate bodily distress disorder
    9R2 Severe bodily distress disorder
    9R3 Somatization disorder
    9R4 Undifferentiated somatoform disorder
    9R5 Somatoform autonomic dysfunction
    9R6 Persistent somatoform pain disorder
    9R6.1 Persistent somatoform pain disorder
    9R6.2 Chronic pain disorder with somatic and psychological factors [not in ICD-10]
    9R7 Other somatoform disorders
    9R8 Somatoform disorder, unspecified

    then, all the legacy terms from ICD-10 were removed, leaving:


    Mild bodily distress disorder
    Moderate bodily distress disorder
    Severe bodily distress disorder

    Last year, this was changed to


    Bodily distress disorder
    > Severe bodily distress disorder

    [There were some interim changes which I'm not including for brevity.]

    Now this has been changed to

    Bodily distress disorder

    Bodily distress disorder
    > Somatization disorder [In Primary Care High Resource, Primary Care Low Resource linearizations]


    So, what are the implications?

    All that can be determined without clarification from ICD Revision is that the section parent class remains Bodily distress disorder under which sits category Bodily distress disorder, and that child category ICD-10 Somatization disorder has been reinserted with its ICD-10 Definition unchanged; and that Severe bodily distress disorder is no longer listed in either the FC view or JL for M and M S view.

    But unless an ICD Revision author has messed up the draft while making other edits this might suggest that although ICD-11 proposes a new section term name for ICD-10's "Somatoform disorders" (Bodily distress disorder) it might now be considering retaining one or more of the old ICD-10 SD terms, at least for Primary Care usage.

    I'll be keeping a close eye, and will add an update to my site.

    Edit to add: (Note the old legacy ICD-10 Definition for the Somatoform disorder section that was displaying in the Beta draft has now been replaced by the Definition for BDD that was recently entered into the Beta draft.)
    Last edited: Feb 18, 2014
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  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Further change at February 18, 2014:

    Neurasthenia, which was previously proposed to be eliminated for ICD-11 or subsumed under "Bodily distress disorder" (or under "Bodily stress syndrome", as per proposals of the Primary Care Consultation Group) has also been reinserted into the Linearizations within the last day or two:


    It is now relisted, here:


    Neurasthenia [In Primary Care High Resource, Primary Care Low Resource linearizations]

    The Definition displaying is the legacy F48.0 Definition from ICD-10.

    Fatigue syndrome *

    is specified as the Inclusion term, as per ICD-10; if you hover over the asterisk in the draft it displays the hover:

    "This term is an inclusion term in the linearizations"

    postviral fatigue syndrome

    remains listed as an Exclusion term to Neurasthenia, as it did in ICD-10.

    This is a good example why no-one should assume that what appears in the Beta draft is finalized. The draft is a work in progress and subject to daily revisions and to approval by the RSG and by WHO classification experts.

    Last edited: Feb 18, 2014
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  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    I have put some notes about some of the features of the ICD-11 Beta drafting platform in the sister thread, here:


    Since not all readers will be able to access that thread (which is in the Members section) I am posting that post here as well, as this is an important topic:

    Some notes about the ICD-11 Beta drafting platform:


    1. What you see at the above URL is the publicly viewable version of the drafting platform.

    The various ICD-11 Topic Advisory Group (TAG) Managing Editors are developing the draft on a second, far more complex electronic platform. Their platform has the facility for uploading discussion notes and for tracking change histories.

    Their version is multi-layered and will have more "Content Model" attributes populated. The "Content Model" shows up to 13 descriptive attributes for any ICD Title term, for example: Parent(s); Definition; Inclusion Terms; Synonyms; Exclusions; Index Terms etc.

    The Beta drafting platform that the public sees is updated daily to reflect chapter reorganizations and category revisions, and new Content Model text is inserted as it is generated by the work groups (TAGs). How much time lag there is between changes made in the work groups' version of the drafting platform before being reflected in the public version, isn't known.

    2. The Foundation Component


    The Foundation Component is a collection of all the ICD entities and allows for multiple parenting.

    3. There will be a number of linearizations which are like sub lists compiled for different purposed from the main Foundation list.

    This is the "Joint Linearization for Mortality and Morbidity Statistics" linearization (which until a few weeks ago was displayed as two discrete lists, one for Mortality and one for Morbity, but these have since been combined):


    There will eventually be linearizations for National Modifications of ICD, for Primary Care and potentially for multi-system diseases that straddle more than one chapter.

    4. Unlike ICD-10, ICD-11 permits multiple parents. ICD terms may be located under more than one parent within the same chapter, or may be listed under more than one chapter.

    For example, tuberculosis meningitis is both an infection and a brain disease and straddles two chapters. When you see greyed out categories in the linearizations, this is the secondary parent location.

    5. To open up the drop down hierarchies within any linearization view, click on the small grey arrows to display the parent, child and grandchildren hierarchies. Not all child categories will have been populated yet, as the TAGs still have a great deal of work to do.

    6. If you go to the Foundation Component view:


    and hover over the blue, red, yellow, green button at the top right of the chapter listings, the hover reads

    "show/hide availability in main linearizations".

    Click on the button and coloured tags will display at the beginning of each category term which indicate the availability of that term within the various linearizations.

    For example, hovering over the colour tags for "Bodily distress disorder" indicates that this term is available "In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource".

    Hovering over the recently re-inserted "Somatization disorder" or the recently re-inserted "Neurasthenia" indicates that these terms are available "In Primary Care High Resource, Primary Care Low Resource".

    (Note that both these terms had been proposed to be replaced by "Bodily distress disorder" (S3DWG work group) or "Bodily stress syndrome" (PCCG work group) but have now been inserted back into the draft, at least for the Primary Care linearizations, and the severity specifier "Severe bodily distress disorder" has been removed, or for some reason, is not currently displayed.)

    The draft is not a static document: the drafting process is ongoing and there may be other changes within this section that have yet to be reflected in the public draft.)

    7. When viewing any category's "Content Model" text, on the right hand side of the category display pane, you may notice an asterisk at the end of the first term listed under "Narrower Terms" or under "Synonyms".

    Mouse hover indicates "This term is an inclusion term in the linearizations"

    Caveat: If linking to this image on other forums or blogs, please include the following information:

    "This screenshot by Dx Revision Watch is taken from the public version of the ICD-11 Beta drafting platform as it had stood on July 25, 2012."


    As you see, at July 25, 2012:

    The ICD Title term: Chronic fatigue syndrome could no longer be found as a child category directly under parent class: Other disorders of the nervous system.

    If searched for, the term displayed under a new “Selected Cause” section, which populated as a kind of subset or sub linearization within the Foundation Component View. CFS displayed with three parents:

    Selected cause is Remainder of diseases of the nervous system in Condensed and selected Infant and child mortality lists
    Selected Cause is All other diseases in the Selected General mortality list
    Selected cause is Diseases of the nervous system

    A large number of terms from other chapters were also grouped under this “Selected Cause” subset within the Foundation Component. There was no explanation in the public version of the Beta draft what the purpose of the “Selected Cause” subset was or how the categories that were now listed under it related to the parent classes under which they had been previously coded as child categories. (These “Selected Cause” listings were later dispensed with, at least in the public version of the Beta draft, or were possibly disabled from being generated.)

    At July 2012, Benign myalgic encephalomyelitis was listed under Synonyms and specified as an Inclusion term in the linearizations (as the hover over the asterisk displayed).

    13 additional terms were listed under Synonyms, including Postviral fatigue syndrome, and two terms imported from ICD-10-CM (the ICD-10-CM Chapter 18 R codes: chronic fatigue syndrome nos and chronic fatigue, unspecified).

    The Definition field for Chronic fatigue syndrome was blank at July 25, 2012.

    There had been an earlier Definition when the first drafting platform was launched (known as the iCAT) but that definition was later removed.

    You can see that earlier Definition in this screenshot from the iCAT, which dates from May 2010, which also shows potential "Content Model" tabs, along the top of the pane:


    By November 2012, another Definition had been entered by ICD Revision which had read as follows:

    Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

    If you go to this post on my site:


    and scroll down to the section heading:

    Timeline charting progression of the three ICD-10 G93.3 categories, Postviral fatigue syndrome, Benign myalgic encephalomyelitis, and Chronic fatigue syndrome (ICD-10 Index only) within the public version of the ICD-11 drafting platform:

    There are links in that Timeline that will display archived screenshots that chart the progression of the Beta draft for the G93.3 terms through the iCAT (2010), the Alpha draft (2011) and Beta draft (2012 onwards).

    Suzy Chapman
    Dx Revision Watch

    Edited to add:

    Note that in the screenshot taken on July 25, 2012, "Chronic fatigue syndrome" displays in the “Selected cause is Diseases of the nervous system” list, positioned beneath "Disorders of the meninges other than infection".

    It is not a child category to parent term, "Disorders of the meninges other than infection".

    Its parent class is "Selected cause is Diseases of the nervous system" and it is an ICD Title term with no child terms of its own, which is why it has no grey arrow in front of it.
    Last edited: Feb 19, 2014
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  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    The following has also been posted in the sister thread which is not viewable by non forum members.

    Screenshots: ICD-11 Beta drafting platform as it stood at February 19, 2014:

    Chapter 05 Foundation Component

    Mental and behavioural disorders

    Bodily distress disorde

    Inserted: Somatization disorder

    Removed: Severe bodily distress disorder

    Note: the Definition text and other attributes for Somatization disorder are legacy text imported from ICD-10. The Definition includes the following text: "Short-lived (less than two years) and less striking symptom patterns should be classified under undifferentiated somatoform disorder (F45.1)."

    There is no undifferentiated somatoform disorder listed in the ICD-11 Beta. It may be the intention to also insert undifferentiated somatoform disorder under BDD or the reference to F45.1 may be due to failure of Revision Managing Editors to edit text that has been imported from ICD-10.

    In DSM-5, undifferentiated somatoform disorder (F45.1) is the ICD-10-CM code to which the new DSM-5 Somatic Symptom Disorder is cross-walked for coding and reporting purposes after October 1, 2014, when ICD-10-CM is scheduled for mandatory implementation.

    [​IMG] .

    Chapter 05 Foundation Component

    Mental and behavioural disorders

    Inserted: Neurasthenia


    Under Exclusions for Neurasthenia, postviral fatigue syndrome remains listed, as it did in ICD-10. Definition text for Neurasthenia is legacy text imported from ICD-10.

    In earlier iterations of the Beta draft, Bodily distress disorder was proposed to replace six ICD-10 F45.x Somatoform disorder categories and F48.0 Neurasthenia with a single disorder construct, with three, then two severity specifiers.

    Now two legacy terms from ICD-10 have been reinserted into the draft for Foundation and Primary Care Low/High Resource linearizations, and the severity specifier, Severe bodily distress disorder, is no longer displaying in the draft.
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  5. Esther12

    Esther12 Senior Member

    Thanks for keeping up with all this Suzy, while you had wanted to pull back. I don't think that there's anyone else who has as good a grasp as to what is going on (including those working on it).

    As the WHO did respond to it, I wonder if these changes were prompted by the recent article and public concern it led to. It wouldn't surprise me if a little sensationalism in the press had led to someone higher-up at the WHO, outside the 'experts' from this narrow area, looking in and saying 'stop doing stuff that could cause me trouble'.

    [edit: I don't want this to sound like I'm imploring Suzy to go on with this when she needs to take the time off... it was just an expression of gratitude... I'm sure that others will be able to get on by with the foundation that has been provided at dxrevision watch.]
    Last edited: Feb 20, 2014
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  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Esther12, thank you for your kind words.

    I shall still be posting some limited updates on my site to selected earlier posts and I have several updates to add this week - so I won't completely disappear.

    I doubt that the recent changes to the Beta draft section for Bodily distress disorder were influenced by concerns expressed to WHO following Penny Swift's since pulled article.

    There have been quite a number of iterations since 2010 and it could all easily change again, next week.

    It's also important to understand that it cannot be determined from what little information displays in the draft which construct "BDD" is, that is, whether it is intended as an SSD-like construct or whether it is intended to embrace elements of Fink's BDS. As you know - there are two groups making recommendations to the Advisory Group for Mental and behavioural disorders.

    At the end of 2012, it was the case that the Bodily distress disorder construct was an SSD-like construct - and SSD is not compatible with Fink's BDS definition and criteria.

    And it is Bodily distress disorder that is the term entered into the Beta draft - not Bodily stress syndrome, which was the term favoured by the Primary Care working group, which did draw heavily on the Fink et al BDS construct.

    Which is a point which Ms Swift had not addressed in her article because she is silent on the work of the S3DWG sub working group and because she had made this leap:

    BDD is entered into the Beta draft.
    BDD must = Fink's BDS.
    BDS captures FM, CFS, ME.
    PVFS, CFS, ME are not currently displaying in the Beta draft.
    Therefore ICD-11 has redefined FM, CFS, ME as Fink's BDS.

    You cannot make that leap for two reasons:

    1. It is not yet clarified why PVFS, CFS, BME are not currently displaying in the Beta draft.
    2. In the context of the ICD-11 S3DWG sub working group's proposals, their description of "BDD" describes an SSD-like framework - not a Fink BSD-like framework.

    Also, the text of the Definition for BDD is based on the S3DWG sub working group's 2012 BDD paper, which describes a "simplified criteria" that features psychobehavioural responses that are very similar to the defining characteristics of SSD criteria. Their emerging proposals for BDD did not describe a Fink BDS-like construct.

    Furthermore, the Fink BDS construct has no requirement for psychobehavioural responses which is what the BDD criteria were based on in 2012.

    So the proposals, as they stood at the time of the since pulled article's publication, may have been for an SSD-like construct and not for the BDS-like construct that Ms Swift's article had focused solely on.

    Now the current situation is that Somatization disorder and Neurasthenia are back in the draft.

    My guess is, and it is just a guess, is that a vague SSD-like construct is still being put forward but with Somatization Disorder replacing Severe bodily distress disorder and with Neurasthenia back in the draft for the Primary care linearizations.

    Is a mash-up between SSD and the ICD-10 status quo to be welcomed?

    Edited to add References for the two key 2012 emerging proposals papers:

    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 at:
    Last edited: Feb 24, 2014
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  7. Firestormm

    Firestormm Senior Member

    Cornwall England
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    In reply to the posting of a link on February 10 for the Dx Revision Watch post: Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft on Action for M.E's Facebook page, Action for M.E. stated:

    "Our view is that M.E./CFS is a physical neurological illness and we will challenge any attempt to wrongly classify it as a psychiatric or mental disorder. We have already discussed this issue with other charities with a view to collaborating in opposing any such move by the WHO. Our CEO has also raised the issue with the Chair of the All Party Parliamentary Group on M.E. with a view to encouraging political opposition to such a move."

    Today, Annette Brooke MP was scheduled to raise an Oral Question in the House of Commons:


    Business Today: Chamber for Tuesday 25 February 2014


    Oral Questions to the Secretary of State for Health

    11 Annette Brooke (Mid Dorset and North Poole)

    What reports he has received on the possible reclassification of ME/CFS by the World Health Organisation. (902634)
    Last edited: Feb 25, 2014
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  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com


    Answer to Oral Question



    Annette Brooke (Mid Dorset and North Poole) (LD):

    What reports he has received on the possible reclassification of ME/CFS by the World Health Organisation.[902634]

    The Parliamentary Under-Secretary of State for Health (Jane Ellison):
    The World Health Organisation is currently developing the 11th version of the international classification of diseases, which it aims to publish in 2017. No discussions have taken place between the Department and the WHO on the reclassification of ME/CFS, but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11.

    Annette Brooke:
    I thank the Minister for her answer. Many people will be greatly relieved about that. As chair of the all-party group on myalgic encephalomyelitis, I receive many representations about GPs in this country still not necessarily recognising the condition. Will she look into that, and will she work with her counterparts in the DWP on the benefits side as well?

    Jane Ellison:
    I am aware that this is a very difficult, complex and emotive area. I have heard before the point that the hon. Lady makes about GPs. I am very happy to take up her points and discuss them with her.
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    To the best of my knowledge, WHO has issued no recent public statement in relation to ICD-11 other than the Twitter response to a member of the public, on February 12, in which it was stated:

    "ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11"

    Do our Under-Secretaries of State rely on Twitter to inform their responses or does Jane Ellison have an additional source?
    Last edited: Feb 25, 2014
  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Well, this is interesting.

    Yesterday I had some exchanges with Annette Brooke MP, Chair of the APPG on ME, who is also my MP.

    Annette was unable to clarify the source for the public statement on which Jane Ellison MP, Parliamentary Under-Secretary of State for Health, had relied for her Oral Question response.

    I have emailed Ms Ellison and requested clarification for her source.

    I have also submitted a request via the Department of Health office that deals with requests for information relating to Ministers and government departments, for the source of WHO's "statement". This is a formal process and replies are provided within 18 working days by a civil servant on behalf of the Minister concerned. Since I am not a constituent of Ms Ellison's ward, she is not obliged to provide me with a response.

    This evening, the three posts on WHO's Twitter site, which were posted on February 12th, in reply to a member of the public, are no longer displaying and would appear to have been expunged.

    Possibly WHO has now decided to issue a formal statement of clarification.

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  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    The WHO's replies are displaying for me this morning, but I have needed to select "All" for them to display, and there were in fact more responses on that date than the three that were originally displaying for me.
    mango likes this.
  13. Snow Leopard

    Snow Leopard Senior Member

    What did those replies suggest?
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    The admin for the WHO's Twitter page made three responses to one Twitter account, and repeated the first of those responses to several other Twitter users.

    I think I have already posted the (unnamed) admin's responses in this thread, but if not, you can read them on my site, here, in this post, with some comment from me on the WHO Twitter admin's response and on the Oral Response by Jane Ellison, Parliamentary Under-Secretary for Health, to the Oral Question raised in the House of Commons by Annette Brooke MP, on February 25:

    Last edited: Mar 3, 2014
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    As posted at @dxrevisionwatch via TwitLonger


    Mr Patel includes links for two Twitter responses to members of the public. One from @WHO admin (unsigned) and the second from Mr Gregory Hartl, Head of Public Relations/Social Media at WHO.

    Mr Hartl had responded to a posting of a link to a since closed petition. Mr Hartl's response needs to be read in the context of the tweet to which he had responded, so although it is useful to have confirmation of a second signed source (from WHO PR/Social Media), it cannot be used as a "stand alone" public statement. If reposting please repost in full, unedited, and with this preamble.

    Response: Ref E00000844965 - Re: February 25, 2014 Oral Questions, House of Commons, Annette Brooke (Mid Dorset and North Poole) (LD)

    Received: March 17, 2014

    Dear Mrs Chapman,

    Thank you for your recent emails to Jane Ellison and the Department of Health about the classification of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply. Please accept this as a response to both of your emails.

    The Department understands that this issue is a complex and emotive issue, and that it is of concern to many people.

    The World Health Organization’s (WHO’s) public statement was made on Twitter, where it stated that ‘Fibromyalgia and ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, [and that] there is no proposal to do so for ICD-11’. The message can be viewed at the following link:

    In addition, on 14 February, Mr Gregory Hartl, Head of Public Relations/Social Media at WHO, stated that ‘there is and never was any intention to [reclassify Fibromyalgia and ME/CFS as a Mental and Behavioural Disorder]’. The relevant message, and its context, can be seen at:

    Finally, you may wish to participate in the development of the eleventh version of WHO’s International Classification of Diseases (ICD). Information about becoming involved in the revision to the ICD is available on the following page:

    I hope this reply is helpful.

    Yours sincerely,

    Rahul Patel
    Ministerial Correspondence and Public Enquiries
    Department of Health



    Received in response to query Ref E00000844965

    Re: Answer by The Parliamentary Under-Secretary of State for Health (Jane
    Ellison) in response to Oral Question, February 25, 2014 House of Commons

    11. Annette Brooke (Mid Dorset and North Poole) (LD) ME/CFS

    The Parliamentary Under-Secretary of State for Health (Jane Ellison) Oral
    Response included the statement:

    "No discussions have taken place between the Department and the WHO on the
    reclassification of ME/CFS, but the WHO has publicly stated that there is
    no proposal to reclassify ME/CFS in ICD-11."

    I should be grateful if you could clarify the source for the WHO public
    statement which informed Ms Ellison's response to Annette Brooke.

    Suzy Chapman
    Last edited: Mar 17, 2014
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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