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A New Term! - "Bodily Distress Syndrome"

Discussion in 'Latest ME/CFS Research' started by Dr. Yes, Apr 26, 2010.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Note that the EACLPP has recently merged with the ECPR:

    "The European Association of Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) and the European Network of Psychosomatic Medicine (ECPR) have recently merged the two associations to create a new society – the European Association of Psychosomatic Medicine (EAPM)"

    Yes, that is what Creed, Fink and colleagues would like to see - a new category - Bodily distress disorder/bodily distress syndrome in what was the Somatoform Disorders section of ICD-10 that would capture IBS, FM, CFS, CF and a number of other illnesses/conditions.

    According to Fink and colleagues, Bodily distress disorder/Bodily distress syndrome is a unifying diagnosis that encompasses somatization disorder, so-called “medically unexplained symptoms” (MUS), fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome and some other conditions which they consider to be closely related, with a likely shared underlying aetiology but expressed through various body systems.

    The ICD-11 Beta draft has already proposed to change the name of the Somatoform Disorders to Bodily distress disorders. Six existing ICD-10 legacy categories have been removed and there are three severities of Bodily distress disorder. But these three new categories have yet to be defined and described.

    It may be the case that ICD-11 Revision is waiting on the outcome of field trials for the Primary Care version of ICD-11 (ICD-11-PHC) before committing to proposing definitions, disorder descriptions etc for these three proposed new categories for the main ICD-11 classification.

    See:

    Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. [JOURNAL ARTICLE]

    Full text, subscription required:
    Family Practice (2012) doi: 10.1093/fampra/cms037
    First published online: July 28, 2012
    http://fampra.oxfordjournals.org/content/early/2012/07/20/fampra.cms037.long
    http://fampra.oxfordjournals.org/content/early/2012/07/20/fampra.cms037.full.pdf html

    Abstract
    http://www.ncbi.nlm.nih.gov/pubmed/22843638


    The paper describes three BSS (Bodily Stress Disorder) symptom patterns and lists examples of

    cardiopulmonary arousal

    gastrointestinal arousal

    musculoskeletal tension (including muscular and joint pain)

    and examples of general unspecific symptoms such as concentration difficulties, impairment of memory, excessive fatigue, headache, dizziness.

    The model is the "autonomic arousal model".

    The paper says that although the conceptualization of BSS as a condition related to "autonomic hyperarousal" is not yet proven, the concept provides "a plausible theoretical model and a positive way to talk with patients about their condition."

    See the Per Fink slide presentation on my site and also compare with the TERM and Reattribution Models that Goldberg, Fink and Rosendal were involved in developing.

    Caveat: the proposals for ICD-11 and ICD-11-PHC are draft proposals and subject to change following field trial evaluation and may not survive the field trials or gain approval of ICD Revision Steering Group and the WHO Geneva classification experts to whom the consultation and sub working groups report.

    Bear in mind also that for ICD-11, current proposals appear to be:

    for CFS to become the Chapter 6 (Neurology chapter) ICD-11 Title category;
    with (B)ME specified as an Inclusion term to CFS;
    and PVFS listed under synonyms to CFS.

    IBS has its own classification outside of Chapter 5 (Mental and behavioural disorders) as does FM.
  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    If you run down this post on my site (which is written for a general audience):

    ICD-11 Revision Beta drafting process: stakeholder participation
    Post #194 Shortlink: http://wp.me/pKrrB-2nw

    about a third of the way down, to this heading
    Who are the stakeholders in ICD?

    I list some of the stakeholders in the ICD-11 development process.

    Although patients and patient advocacy organizations are stakeholders, ICD-11 Revision is going to take more notice of comments from health professionals and allied health professionals and these are the people who need to be submitting comments during the drafting process (which will ongoing over the next two years). There are no fixed comment periods like there were for DSM-5.

    We need to involve our professionals and our advocacy organizations in this process.

    ICD-10 is used in over 110 countries throughout the world that will eventually adopt ICD-11.

    ICD-11 will also potentially have downstream impact on the "clinical modifications" (CM) of ICD - Canada is expected to move onto a CM of ICD-11 post 2018, Australia may adopt ICD-11 or a CM of ICD-11 earlier than Canada and the US. The US isn't expected to move onto a CM of ICD-11 until post 2020, but there may be some "retro-fit" of ICD-11 into ICD-10-CM before then.

    So it's of global concern and our professional advocates need to be informing themselves and involving themselves now.
  3. biophile

    biophile Places I'd rather be.

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    Bodily Distress Syndrome

    http://www.eaclpp.org/tl_files/content/Presentations/EACLPP_Per Fink_Somatoform Disorders.pdf

    I have not yet had a chance to examine the validity of Fink's analysis, and there may indeed be fundamental similarities between arbitrarily defined syndromes, but the whole thing seems to me like an attempt to take semi-matched pieces from different jigsaw puzzles and bang them together with a hammer until they fit, Homer Simpson style.

    I get a feeling it is an attempt to rule over all the syndromes, "one ring to rule them all", Lord of the Rings style. I wonder how many "medically unexplained" symptoms from 200 years ago could just be lumped together when casting a wide net to make it look like various manifestations of the same distress disorder.

    I thought BDS was supposed be neutral on etiology, but in one of the slides which describe the underlying latent structure model, "stress" is at the very top with no mention of biomedical factors, stress supposedly leads to all symptoms in general, (emotional distress, cognitive disturbances, bodily distress) with all physical symptoms attributed to "Autonomic arousal & HPA axis hyperactivity 'alertness'" arising from bodily distress.

    This slide really demonstrates the overall mindset well:
    Antidepressants do not even work on CFS. CBT/GET only works in CFS for a minority of patients while the self-reprted improvemensrs are minimal without objective imporovements and have not been convincingly separated from reactivity biases inherent in an unblinded trial. Also, throwing antidepressants and CBT/GET at any medical problem is bound to get some results for some patients, it is not really a strong argument for lumping all those conditions together if the effects are small and generic. Arguments based on the "behaviour" and "emotional comorbidity" are not really explained.
    taniaaust1 likes this.
  4. alex3619

    alex3619 Senior Member

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    madietodd and Enid like this.
  5. Enid

    Enid Senior Member

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    What on earth is a public relations spokesman doing in medicine (except as self promotion of course - which as far as I know no other MEDICAL specialism resorts to ....... no PRO for Immunologists, Cardiologists and Neurologists etc., indeed quite the opposite as all the Docs in my own family know - the rapid advance in scientific findings precludes as the body of knowledge grows, absorbs, adjusts daily in all their disciplines).
    Interesting article - thanks alex.
  6. alex3619

    alex3619 Senior Member

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    Hi biophile, thats what hysteria was. Everything lumped together. Later we had neurasthenia, which started as a neurological condition then became everything lumped together. For you see hysteria was mostly in women, but neurasthenia was mostly for men ... couldn't have them with the same condition! Men aren't that fragile, it has to be something different, surely. o_O

    One of the things that psychiatry has done is reinvent itself in cycles. As things get discredited they rediscover something old and give it a new name.

    Bye, Alex
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  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    The DSM-5 construct of "Somatic Symptom Disorder (SSD)" is supposed to be neutral on etiology.

    For SSD, the focus is shifted away from whether the distressing symptoms can be medically explained or are considered "medically unexplained."

    The focus shifts instead to the patient's cognitions and responses - "excessive thoughts, behaviors and feelings" about the seriousness of distressing and persistent somatic symptoms which may or may not accompany diagnosed general medical conditions, and the extent to which "illness preoccupation" is perceived to dominate the patient's life.

    The Exclusion for the "BSS" construct being field tested for the Primary Care version of ICD-11 is:

    "Patients with anxiety or depression at case level should not be diagnosed with BSS, but sub-threshold anxious depression may be present. If symptoms are accounted for by a known physical disease this is not BSS."

    This appears to diverge from DSM-5's SSD criteria, for which an additional diagnosis of SSD may be applied in the presence of diagnosed and "well-recognised organic disease," such as diabetes, cancer or heart disease; the so-called FSSs or in the presence of psychiatric disorders if the clinician considers that the patient's anxiety/distress in response to their somatic symptoms is maladaptive or disproportionate, or considers that excessive time and energy is being devoted to illness concerns and that the patient's life has become subsumed or dominated by their symptoms.

    The Presenting symptoms/complaints for BSS are: Multiple somatic symptoms over time, in association with high distress and accompanied by disability. Symptoms may change over time.

    The Clinical description is: Multiple persistent somatic symptoms. For a diagnosis of BSS, symptoms must at some stage present as autonomic arousal symptoms, musculoskeletal tension or general/neurological and cognitive symptoms. Symptoms are distressing and/or result in significant disruption in daily life, as well as persistent concerns about the medical seriousness of the symptoms.

    The "Required symptoms" for a diagnosis of BSS in the focus group study were: At least 3 persistent symptoms over time attributable to autonomic over-arousal (cardio-respiratory, gastrointestinal, musculoskeletal) or as general symptoms of tiredness and exhaustion; health concerns expressed as excessive time and energy devoted to these symptoms; symptoms are distressing and result in significant disability.

    Whereas the criteria for DSM-5's SSD require: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life, [Ed: note: symptom patterns not specified] with excessive thoughts, feelings and behaviors related to these somatic symptoms or associated health concerns and at least one of the following present: Disproportionate and persistent thoughts about the seriousness of one's symptoms; Persistently high level of anxiety about health or symptoms; Excessive time and energy devoted to these symptoms or health concerns.


    According to Chapter 2 of this source [1], the new "Bodily stress syndrome" category will replace "medically unexplained somatic symptoms" and is proposed to include "milder somatic symptom disorders" as well as DSM-5's proposed "Complex somatic symptom disorder."

    But the ICD-11 Primary Care version focus group journal paper does not mention the accommodation of DSM-5's
    [C]SSD construct and none of the focus group participants appear to have raised queries over how the [C]SSD construct would fit into the BSS construct.

    So how would BSS be operationalized and how would it also accommodate the DSM-5's construct of SSD?

    a) Would the clinician say - patient X has diabetes; patient X reports distress about symptom Z; diabetes is a known physical disease; symptom Z is a symptom associated with diabetes, therefore patient X is excluded from a diagnoses of BSS (irrespective of the level of distress and whether the level of distress is considered "excessive" in the context of diabetes).

    or

    b) (To accommodate SSD), patient X has diabetes; patient X reports distress about symptom Z; symptom Z is a symptom associated with diabetes but as clinician, I consider patient X's response to reported symptom Z is excessive and maladaptive, therefore, in addition to a diagnosis of diabetes patient X also merits an additional diagnosis of BSS.

    But the Exclusion for BSS is: "If symptoms are accounted for by a known physical disease this is not BSS."

    Which means either excluding diabetes altogether or making a subjective decision about how much distress and concern, for example, in response to diabetes related peripheral neuropathy pain is "reasonable."

    None of the focus group participants appear to have raised the issue of accommodating SSD. But possibly this was not presented to them as part of the scope of the proposed new disorder, BSS, and it's not mentioned in the paper. Or the decision to include [C]SSD within BSS may have changed since the preparation of the text for Chapter 2 and the submission of the text of the focus group study paper for journal publication.

    If a), what "known physical diseases" and their symptoms is the clinician to regard as excluded from BSS and are CFS, FM and IBS viewed for the purposes of the construct of BSS as non diseases?

    It was recorded in the paper there was quite a strong feeling amongst the New Zealand group that Chronic fatigue syndrome did not fit the paradigm as well as other disorders particularly when there was a good history of preceding viral infection - about which no comment is made by the paper's authors.

    Examples of differential diagnoses associated with multiple symptoms were listed in the paper as: multiple sclerosis, hyperparathyroidism, acute intermittent porphyria, myasthenia gravis, AIDS, systemic lupus erythematosus, Lyme disease, connective tissues disease.

    If BSS is intended by the Primary Care Consultation Group to include SSD, then there appears to be a major flaw here which would make operationalizing the construct difficult and the ICD classification experts should reject this proposal (though there are many other reasons why they should reject).


    1] 21st Century Global Mental Health by Dr Eliot Sorel, Professor, George Washington University, Washington D.C.
    Jones and Bartlett Learning: http://www.jblearning.com/catalog/9781449627874/
    Sample Chapter 2 by David Goldberg: http://samples.jbpub.com/9781449627874/Chapter2.pdf
    biophile likes this.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Enid, the APA recently launched a new website run by a PR firm to address criticism. It's here:

    http://dsmfacts.org/issue-accuracy/
    alex3619 likes this.
  9. Enid

    Enid Senior Member

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    Thanks Suzy - when so much of their work is speculative (not the result of science - cannot be proven, and they know it) their tactics stink. Thank heavens for you and other watchers reining in their excesses.
    taniaaust1 likes this.
  10. COACH

    COACH

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    I am wondering why there is not new information on this thread. Has this discussion moved elsewhere?
  11. Esther12

    Esther12 Senior Member

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    It's a complicated topic, and I know that I've been struggling to keep up with it. I've had to largely give up on the details, but thankfully it seems that the problems here have now gained some wider attention thanks to the work of others (Suzy certainly deserves a lot of thanks for the work she has put in).

    The dxrevision site is well worth checking in on:

    http://dxrevisionwatch.com/
    WillowJ and COACH like this.
  12. COACH

    COACH

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    Thanks Esther12. Do revision watch is a great site. I saw where healthcare workers can submit comments as part of the ICD revision process but I was trying to find a way those of us not in healthcare could have a voice in this. I am coming late to this whole discussion but I was hoping to find some way to help keep this from happening. If anyone knows of a way please let me know. If I missed this in reading, I am sorry. My brain seems extra tired tonight.
  13. WillowJ

    WillowJ Senior Member

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    There was a time when they had open comments from everyone, but it might not be the right time for this any longer.

    It's certainly possible to message Suzy and ask how you can help.
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