Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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The future of somatoform disorders

Discussion in 'Latest ME/CFS Research' started by daisybell, Sep 26, 2014.

  1. daisybell

    daisybell Senior Member

    New Zealand
    New article on medscape here

    "People suffering from medically unexplained physical symptoms represent the largest group of patients in psychosomatic and behavioural medicine, and therefore, their classification is of pivotal relevance. The psychiatric classification systems of the last decades used the concept of 'somatoform disorders' to identify this patient group. However, the classification and labelling of somatoform disorders has been a point of discussion since its introduction in 1980.[1] Although subsequent revisions introduced only minor modifications, DSM-5 brings some substantial changes of this category, and also suggests relabelling somatoform disorders to 'somatic symptom disorder' (SSD).

    In this article, we will discuss whether SSD solves the existing problems around the concept of somatoform disorders. We will also discuss two alternatives with their pros and cons, namely the bodily distress disorder concept originally introduced by Per Fink and colleagues[2] and which is a concept that found the sympathies of the ICD-11 working group, but we will also discuss the traditional concept of functional syndromes which still benefits from its high acceptance in nonpsychiatric fields of medicine."

    There is discussion around the concept of bodily distress syndrome, under which CFS is grouped....
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  2. Esther12

    Esther12 Senior Member

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  3. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    I can only barely skim this article. The whole issue makes me too:mad:. If only some of these authors would come down with this psychological abnormality.:ill::depressed::vomit::bang-head:
  4. Min

    Min Guest

    I do not understand how the psychiatric profession is perrmitted to ignore the World Health Organisation's classifications.

    For example, Fibromyalgia is classified by the WHO as a soft tissue disorder and Myalgic Encephalomyelitis as a neurological one.

    I do not understand either why out two largest UK charities, the ME Association and Action for ME are not opposing the introduction of the term 'bodily distress syndrome', which has no basis in science and will do us enormous harm.Instead, they have chosen to be part of the Collaborative with Peter White.
    Last edited: Sep 27, 2014
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  5. Psychiatry needs destroyed to the bedrock, then the minority of.good professionals and systems rebuilt
    No use trying to deal.with such assholes so divircewd from reality, logic or.compassion
  6. anciendaze

    anciendaze Senior Member

    Now I can see what happened to me. It must have started when I bought an SSD from Newegg! :rolleyes:

    Unfortunately for this hypothesis, my problems already existed at a time when Solid State Disks were science fiction.

    Ain't terminology wonderful? You can talk about things like vampires, werewolves and sidhe w/o bothering about the question of whether or not they are truly responsible for mysterious troubles. There was a time when careful people put out a saucer of milk periodically to keep the last of these from souring the rest of their milk.
  7. Ah! So that's where the buggers came from!
    Psychs are Unseelie Fairies, it all makes sense now! :p
  8. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    Clarification re terminology used in the Rief and Isaac paper:

    I had contact with the paper's authors, Profs Rief and Isaac, when this paper was first published, in July.

    Prof Rief provided an authors' copy for my interest. The paper was initially published behind a paywall but was later made free access by Curr Opin Psychiatry and is now also published on the Medscape site.

    If you do not have a registration for Medscape, you can access the full text in html format at Curr Opin Psychiatry or download a PDF (from the link on the right of the page):

    The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry. 2014 Jul 14.

    In the introduction to their paper, the authors write that they will be discussing the new SSD construct and two alternatives [to the Somatoform disorders] with their pros and cons, "namely the bodily distress disorder concept originally introduced by Per Fink and colleagues," which they say is "a concept that found the found the sympathies of the ICD-11 working group." They would also be discussing "the traditional concept of functional [somatic] syndromes."

    NB: The authors have used the term "bodily distress disorder" throughout their paper and also in the context of an ICD-11 working group, for which they do not give the group's name.

    As I have explained many times before, there are two ICD-11 convened working groups that are making recommendations for the revision of the ICD-10 Somatoform disorders and the two groups have proposed divergent disorder constructs.

    It needs to be understood that in the context of ICD-11, "Bodily distress disorder (BDD)" is the term entered into the ICD-11 Beta draft and the term currently favoured by the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG), which is chaired by Professor Oye Gureje.

    As defined in the ICD-11 Beta draft and in the 2012 paper by Gureje and Creed, BDD (with three severities, Mild, Moderate and Severe) describes a disorder concept that has greater conceptual alignment with DSM-5's SSD.

    The disorder concept that Rief and Isaac describe in their paper is not the BDD construct as entered and defined and characterized in the Beta draft.

    What Rief and Isaac are discussing in their paper is the BDS construct as published by Fink et al.

    It is the ICD-11 Primary Care Consultation Group (PCCG), which is chaired by Professor Sir David Goldberg, that has favoured a modified BDS construct, which the Primary Care Consultation Group has proposed to call "Bodily stress syndrome (BSS)."

    So there are two terms and two constructs that have been proposed for ICD-11:

    BDD and BSS.

    In the context of the two ICD-11 working groups' alternative proposals:

    BDD (as proposed by the S3DWG group) = a construct with good conceptual and criteria alignment with DSM-5's SSD and poor conceptual and criteria alignment with Fink et al's BDS.

    BSS (as proposed by the Primary Care group) =
    a construct that in 2012 drew heavily on the Fink et al BDS construct and criteria but also incorporated some SSD-like psychobehavioural features, which do not form part of the BDS criteria.

    Prof Rief agreed that the use of the BDD term, in the context of ICD-11, to define a disorder construct that is not characteristic of Fink et al's BDS is confusing, as Fink et al and other researchers and clinicians have used the terms "BDD" and "BDS" interchangeably since around 2006.

    He also confirmed that the paper does not discuss the S3DWG "BDD" construct that is entered into the Beta draft.

    On June 24, 2014, ICD Revision's Dr Geoffrey Reed stated to me, via email:

    "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, so at present this is not an active discussion and I have little else to say about it. 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."


    "I understand your concerns about the Fink et al. construct as it has been articulated by them. You have been very clear about this, and I think your analysis is accurate, We are currently involved in testing the primary care group's proposals in this area in primary care settings around the world, in part to compare how they work with the proposals of the Working Group on Somatic Distress and Dissociate Disorders. Whether the primary care proposal ends up capturing specific groups of patients in primary care who are likely to have underlying medical conditions will certainly be one of the issues for examination and further discussion..."

    In sum, where Rief and Isaac are using "BDD" in their paper what they are referring to is the Fink et al BDS disorder construct - not the SSD-like construct with criteria based on psychobehavioiural characteristics that is entered into the ICD-11 Beta draft, as proposed by the S3DWG working group, and which the S3DWG has proposed to call "BDD."

    For further information of the current status of the Beta draft and additional comments from Dr Geoffrey Reed, see this post on Dx Revision Watch:

    Summary of responses from WHO re: Bodily distress disorder, Bodily stress syndrome, Bodily Distress Syndrome July 29, 2014:

    This July 2014 presentation from Mayo Clinic, which had been a centre that field tested DSM-5's SSD (or CSSD as it was called at the point at which the field trials were carried out), also references comparison between DSM-5's SSD and the ICD-11 Beta draft "Bodily distress disorder" (at 9 minutes in from start):

    Somatic Symptom Disorders Part I: New Terminology for New Concepts:


    Over the next week or so, I shall be posting a three part briefing document on my site which will summarize current knowledge of the two sets of proposals for ICD-11 Beta draft for a proposed replacement for the ICD-10 Somatoform disorders.

    Suzy Chapman for Dx Revision Watch

    Caveats: The ICD-11 Beta drafting platform is not a static document: it is a work in progress, subject to daily edits and revisions, to field test evaluation and to approval by ICD Revision Steering Group and WHO classification experts. Not all new proposals may survive ICD-11 field testing. Chapter numbering, codes and Sorting codes currently assigned to ICD categories may change as chapters and parent/child hierarchies are reorganized. The public version of the Beta draft is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and category omissions.
    Last edited: Sep 28, 2014
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  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    There is NO legal requirement, or statutory requirement, or anything, requiring that they accept medical or scientific validity of WHO classifications. WHO ICD is just a reporting code. It has bureaucratic not medical validity. Pursuing this line will only ever be ignored. It will also never prevent alternative diagnoses which will be reported differently.

    Let me state it another way. ICD is a bureaucratic bean counter code book. It has no scientific validity. We have to get validity some other way.

    The days when ME and CFS patients are routinely treated as psychiatric cases are numbered due to advancing research. However the unvalidated broadening of diagnostic criteria and categories will still lead to people getting both reclassified and given additional diagnoses, even after we have diagnostic tests and adequate treatments.

    Psychobabble needs to be opposed, but we cannot do that by citing ICD. Its the biggest problem in modern medicine in my view. It discredits the entire medical profession, with only a small minority of medical professionals willing to stand up and be counted in public. Many more oppose it privately - what will lead them to make the fight public?
    Last edited: Sep 28, 2014
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  10. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    Earlier this month, Professor Oye Gureje (who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders), presented on

    "Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders"

    as part of series of symposia on the development of the ICD-11 chapter for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid (14–18 September 2014).

    Unfortunately, I was not able to attend this ICD-11 symposium presentation. A transcript/slides are not currently available.


    Note that the criteria being used for the field testing of the Primary Care Consultation Group's "BSS" for comparison with the S3DWG's "BDD" construct are not available. It is not currently known to what extent the PCCG's proposal for a "BSS" construct mirrors Fink et al's BDS or whether "BSS" remains a hybrid of SSD psychobehavioural criteria tacked onto BDS-like "symptom clusters from body or organ systems" criteria.

    The PCCG's proposals, as they had stood in 2012 when they were put out to focus group scrutiny, can be read in this paper, which is free access:

    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]. [Abstract: PMID: 22843638]
    Full free text:

    Note the proposed criteria (as they had stood in 2011/12) are in Appendix 2 at the very end of the paper, beyond the References. But the paper also includes tentative disorder descriptions within the body of the paper.
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  11. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    From my briefing document:


    There are significant differences between the structure of ICD-10 and ICD-11: more chapters (currently 26 against ICD-10's 22); reordering of chapters; restructuring of disease classes and parent/child hierarchies within chapters; renaming of terms; relocation of some terms to other chapters or to new chapters; multiple linearizations; more descriptive content; a new system of code numbers. (Disease terms with an equivalent ICD-10 term are back-referenced to their legacy terms and codes in the electronic platform for ICD-10 Version: 2010) [6].

    Mutiple parents and multisystem diseases

    For ICD-10 Tabular List, an ICD entity (a parent class, title term or inclusion term) can appear in only one place within the classification.

    For ICD-11, multiple parentage is permissible. In the Foundation Component, disorder or disease terms can appear under more than one hierarchical parent [7].

    Diseases that straddle two chapters, like malignant neoplasms of the skin, can now be viewed from Diseases of the skin as well as the Neoplasms chapter.Premenstrual Dysphoric Disorder (PMDD), proposed for inclusion in ICD-11, is listed under both Depressive disorders, in the Mental and behavioural disorders chapter, and also under Premenstrual tension syndrome under new chapter, Conditions related to sexual health.
    So the ICD concept of discrete chapter location is dispensed with for ICD-11.

    In 2010, the Revision Steering Group posted a discussion paper on the potential for a new chapter for Multisystem diseases, but this proposal has been rejected [8].

    In 2013, consideration was being given, instead, for generating a multisystem diseases linearization – as a virtual chapter – compiled from the Foundation Component that lists all ICD disorders and diseases, but there would be no separate Multisystem diseases chapter within the print version [9].

    It isn't known whether a decision has been reached but there is currently no ability to generate a multisystem diseases linearization from the Foundation Component, at least not within the public version of the Beta drafting platform. How to represent multisystem diseases within ICD-11 (and the potential for a category term to be assigned to multiple parents) could have implications for classification of one or more of the three G93.3 terms.

    Another major difference between ICD-10 and ICD-11 is the “Content Model.” For ICD-11, all uniquely coded ICD Title terms (but not their Inclusion terms or Synonyms) are intended to have Definitions and in some cases, other descriptive content populated [10]. Whereas terms located in ICD-10 chapters other than Chapter V: Mental and behavioural disorders were listed, to quote WHO's, Bedirhan Üstün, like a laundry list.


    What might the working group potentially be considering ?

    • The [ICD-10 G93.3] terms may have been removed from the draft in order to mitigate controversy over a proposed change of chapter location, change of parent class, reorganization of the hierarchy, or over the wording of Definition(s).

      (Whether a term is listed as a coded Title term, or is specified as an Inclusion Term to a coded term or listed under Synonyms to a coded term, dictates which of the term(s) are assigned a Definition. If, for example, CFS and BME were both coded as discrete ICD Title terms, both terms will require Definitions and other descriptors.)
    • TAG Neurology may be proposing to retain all three terms under the Neurology chapter, under an existing parent class that is still under reorganization, and has taken the three terms out of the linearizations in the meantime, or is proposing to locate one or more of the terms under a new parent class for which a name and location has yet to be agreed.

    • TAG Neurology may be proposing to locate one or more of these terms under more than one chapter, for example, under the Neurology chapter but dual parented under the Symptoms and signs chapter. Or multi parented and viewable under a multisystem linearization, if this proposed linearization remains under discussion.
    • TAG Neurology may be proposing to retire one or more of these three terms (despite earlier assurances by senior WHO classification experts). But I think this unlikely. ICD-11 will be integrable with SNOMED CT, which includes all three terms, albeit with ME and BME listed under synonyms to CFS, with PVFS discretely coded.
    • Given the extension to the timeline, TAG Neurology may be reluctant to make decisions at this point because it has been made aware of the HHS contract with U.S. Institute of Medicine (IOM) to develop “evidence-based clinical diagnostic criteria for ME/CFS” and to “recommend whether new terminology for ME/CFS should be adopted.” Any new resulting criteria or terminology might potentially be used to inform ICD-11 decisions.
    Other possibilities might be listing under Certain specified disorders of the nervous system or under Symptoms, signs and clinical findings involving the nervous system, which is dual parented to both the Neurology chapter and the Symptoms and signs chapter.
    Last edited: Sep 28, 2014
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  12. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    FOI (under SCOTLAND FOI ACT 2002) fulfilled on September 24, 2014.


    The Quality Unit: Health and Social Care Directorates

    Planning & Quality Division

    Your ref: FoI/14/01460

    24 September 2014


    Thank you for your request dated 27 August 2014 under the Freedom of Information (Scotland) Act 2002 (FOISA)...

    Your request

    Under the Freedom of Information (Scotland) Act 2002, please provide the following.

    Please send me copies of all correspondence, emails, letters, minutes relating to:

    Enquiries made by Scottish Health Directorate to World Health Organization (WHO), 20 Av Appia, CH-1211, Geneva, in respect of:

    Classification of the three ICD-10 (International Classification of Diseases 10th edition) G93.3 coded disease terms in the forthcoming revision of ICD-10, to be known as ICD-11:

    Postviral fatigue syndrome (Post viral fatigue syndrome; PVFS)

    Benign myalgic encephalomyelitis (myalgic encephalomyelitis; myalgic encephalitis; ME);

    Chronic fatigue syndrome (CFS; CFS/ME, ME/CFS)

    During the period:

    1] January 1, 2013 - December 31, 2013

    2] January 1, 2014 – July 31, 2014

    I also request copies of responses received from WHO in reply to enquiries made by Scottish Health Directorate during these periods in respect of the above ICD disease categories.

    Response to your request

    Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

    On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

    The WHO responded on 12 March; “The question regarding MS/CFS and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below. The general information on ICD Revision can be accessed here: The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration):”.

    A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015 ?”. WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online with the mechanisms provided already.”

    Your right to request a review

    If you are unhappy with this response to your request, you may ask us to carry out an internal review, by writing to Paul Gray, Director of Health and Social Care Directorate, Scottish Government, Room 1E-04, St Andrews House, Edinburgh, EH1 3DG. Any request should explain why you wish a review to be carried out and should be made within 40 working days of receipt of this letter.

    We would then reply within 20 working days of receipt of the request. If you were not satisfied with the result of the review, you would of course have the right to make a formal complaint to the Scottish Information Commissioner. More detailed information on your rights is available on the Commissioner’s website at:

    Yours sincerely

    David Cline
    Unit Head
    Strategic Planning and Clinical Priorities Team
    Last edited: Sep 28, 2014
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  13. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    According to a recent slide presentation by WHO's B Ustun [1], current scheduling of ICD-11 for World Health Assembly (WHA) approval is for May 2017, with implementation in 2018+.

    Member States currently using ICD-11 will transition to ICD-11 at their own convenience. There will be no mandatory implementation date for ICD-11 like there is for the U.S's forthcoming ICD-10-CM/PCS.

    I will post links when I have published my three part briefing document on my Dx Revision Watch site.

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  14. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    If any readers are considering reposting the link for the July 2014 Rief and Isaac paper on other forums or on social media (or have already posted it), I strongly advise that attention is also drawn to the clarification in Post #8:


    Over the past couple of years, there has been considerable misreporting of proposals for ICD-11 on blogs, forums and social media because people are not sufficiently informed about how the Beta drafting platform functions; because they are not sufficiently familiar with the distinctions between the disorder conceptualizations and criteria for DSM-5's SSD, ICD-11's proposed BDD, ICD-11 Primary Care Group's proposed BSS and the already operationalized, Fink et al 2010 BDS criteria. Because they have not read the emerging proposals papers. Or because they have failed to take on board that there are two ICD-11 working groups and there have been two sets of proposals.

    This Rief and Isaac paper does not mention or discuss the ICD-11 S3DWG's proposals that are entered into the Beta draft; nor does it compare them with the most recent proposals of the ICD-11 PCCG's BSS; nor does it compare either BDD or BSS with the already operationalized, Fink et al 2010 BDS criteria.

    Nor does the paper make any reference to the two key ICD-11 emerging proposals papers published in 2012:

    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. Family Practice (2013) 30 (1): 76-87. Full free text:

    Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. [Full text behind paywall]

    As such, it cannot be considered a source of information on current ICD-11 proposals and it should not be presented as such; it needs to be placed in the context of the two key 2012 papers, the ICD-11 Beta draft content and in the context of responses from WHO's Dr Reed.
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  15. Esther12

    Esther12 Senior Member

    Thanks for all the info Suzy, and all your on-going work on this.
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  16. A.B.

    A.B. Senior Member

    The future of somatoform disorders? We will look at them in the same way we look at demonic possession and similar prescientific superstitious explanations for illness because that is what they are.

    It only takes one technological or scientific breakthrough.
    Last edited: Sep 29, 2014
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  17. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Unfortunately, so far at least it only takes one breakthrough per disease.They have been disproved disease by disease. That is possibly part of why they are broadening definitions, these capture as many badly understood diseases as possible.
    Cheshire likes this.
  18. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Here is the future of the definition of somatoform disorders:
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