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CFS Patients War Against Controversial U.S. Health Research Plan

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Feb 8, 2014.

  1. leela

    leela Slow But Hopeful

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    I suspect there has been a good deal of attention paid to the mounting patient movement; and one of the key points we've been hammering for some time is the WHO classification. It is one of the only solid, long-standing, easily comprehensible arguments against the psychobabble we've had that is closest to the current climate of "buzzwording" and "branding"--this is how things appear to work in today's world. One short, easily repeatable blurt of what one would hope was, and in this case is, a fact.

    I believe knocking this piece off the board is one of many calculated chess moves in the Long Con that the government-insurance complex is currently attempting to perpetrate. It fits in nicely with the P2P/IoM baloney sandwich.
    Iquitos likes this.
  2. alex3619

    alex3619 Senior Member

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    ICD coding has never been a solid argument. I have warned that using it will have doctors thinking we are irrational. Its only a coding system, it has no scientific validity. Now the underlying research on ME is different, and good research goes back to at least 1955. Yet its complicated, hard to find, hard to explain, usually small studies, often unreplicated, etc. etc. etc.

    The science is going to change everything in the long run, but in the short run the politics and pseudoscience dominate.

    I think the Biopsychosocial movement will be dismissed much like Eugenics was, but its probably still a decade or three before this happens. I want to hasten that day. The other alternative is the BPS movement will radically transform itself.
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  3. PennySwift

    PennySwift

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    I am quoting what the IOM calls it. I can't really say it's XXXXXX can I?
  4. Ren

    Ren ...

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    Sorry, I haven't kept up with reading all that's in this thread, but whenever I try to access the above story - either through the posted link or a google search - I just get an error message from Liberty Voice saying the page has been removed. Anyone else notice this? Thanks!
  5. Firestormm

    Firestormm Senior Member

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    The story was pulled, Ren. Expected now to be republished with corrections - I have heard tomorrow or Saturday.
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  6. WillowJ

    WillowJ Senior Member

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    It would impact clinical situation directly. The diagnosis would change, and the officially-recommended treatment would change (including a specific recommendation to limit visits and limit testing).

    Also, benefits level would change: in US, medical coverage benefits for mental-classified diseases have various time/repetition limits, in UK support benefits for assistance have less coverage amounts; this is nonsense, as mental-classified diseases are no less important and no more the patient's responsibility, but it is reality.
    Purple and alex3619 like this.
  7. WillowJ

    WillowJ Senior Member

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    hmm, that's an odd thing for them to say, as it implies original research (at least that's the way it sounded especially in the first article), when it's mostly a literature review.

    Sorry, I was grumpy that day, but I do appreciate that you're writing about ME/CFS (as we mostly get ignored), and working on getting things right. Coming here is very smart.

    Thank you. :)
  8. WillowJ

    WillowJ Senior Member

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    Some of the psychobabblers claim that patients or patient charities somehow managed to finangle a neurological classification, which is false. Is there any value in proving that it was Dr. Achelson and Dr. Ramsey rather than MEA or whomever?

    That's the reason I have been interested in this. To counter a piece of the Big Lie, the claim that it was an improper process which led to this classification in the first place, when in reality it was normal. Some docs did some research; it got classified in what seemed a logical place based on that research.
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  9. alex3619

    alex3619 Senior Member

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    There is abundant evidence that some of us have neurological issues. I suspect the problem is definitional.

    If you use a definition of CFS that is based only on chronic fatigue, the vast majority will have things like post viral fatigue and depression. Look for clear neurological signs in these and you might not find them. So if most don't have neurological signs, according to this line of reasoning, then neurological signs are not a feature of CFS.

    The conflation of CFS and ME do not help with this.

    In the US alone I recently saw an estimate that 30 million have rare genetic disorders. As a collective, the group of rare disorders is quite common. I suspect most of these will have some form of chronic fatigue at some point.

    Neurological signs have been a feature of most of the well investigated epidemics. They are often found at autopsy, with both brain and spinal lesions being found. The majority of patients have dysautonomia which is neurological. Many have small fiber polyneuropathy, again neurological.

    Photophobia is a common symptom - neurological. It is probable that noise and touch sensitivity are neurological. Heat sensitivity, one of my issues, is often from small fiber polyneuropathy, which I probably have. Cold sensitivity though is probably vascular or metabolic.

    There is huge risk of the fallacy of begging the question in all this. The psychogenic people use assumptions and reasoning that derive from presuming they are right. However, so do many pushing the biomedical view. Its an insidious fallacy - I probably fall foul of it from time to time myself, and I am aware of the issue (though my brain is fubar).

    However the primary fallacy in psychogenic medicine has a name, the Psychogenic Inference or Psychogenic Fallacy. The psychs pushing psychogenic views also fall foul of the Psychologists Fallacy, in which they reason about normalcy based on their own personal expectations, and not on the patient circumstances.
    Last edited: Feb 14, 2014
  10. Firestormm

    Firestormm Senior Member

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    @alex3619 As far as I am aware a neurological sign is something that a patient reports or can be observed by a doctor visually, that is then able to be linked to a broken process or a biological abnormality.

    The mention of 'seen at autopsy' means very little in the world of ME science. Not enough autopsies have been performed to be definite about anything. And that is our greatest problem. We might, as patients, comment upon something, but it isn't regarded as a 'sign' of anything else.

    The much-vaunted research into ME over the last 50 years has amounted to diddly-squat in my view - it has been too small and has largely gone unreplicated - even by those scientists now in the field who are moving things forward.

    And I find myself asking why? Why hasn't some of today's experts done more to link supposed 'signs' to biological cause or to replicate past pilot research findings?

    And I am even less sure about 'spinal lesions' or 'brain lesions' either, other than that we occasionally hear then cited as 'evidence' that ME is neurological. If individuals report they have these things show on MRI or we hear of them following autopsy - is it something that relates to the individual or to the disease? How common are lesions? Are lesions meaning the same to all people - are we sure that a report of a lesion - is genuine? Etc.

    If we can get a Post Mortem Tissue Bank established somewhere, and it can be populated with enough donors, then we might one day be able to point to the e.g. basal ganglia and say - 'here's the link and the problem here causes the sign observed there and the resulting symptoms'.

    But until that day dawns - and efforts are under way to launch such a research platform in the UK at least (may be other efforts elsewhere I don't know) - we are stuck in a worse position than when whoever it was managed to get the name into WHO under 'diseases of the nervous system' or whatever.

    bengin-Myalgic-Encepahlomyelitis (patients always omit the benign for obvious reasons - which they shouldn't do) is simply a name in the WHO directory of diseases.

    The WHO does not declare what it is or how it should be defined, or how it should be treated.

    I honestly don't believe it sitting in that corner for all this time has made the slightest bit of difference to me as a patient, or as a patient on benefits, or it terms of my treatment.

    And how to explain current research, which is seemingly moving even more evidence of the immune system playing the key role here?

    I think we should stop trying to fit research evidence to the traditionally-interpreted-as-being-the-most -appropriate-name. Time perhaps to move on...

    @WillowJ I would be interested to learn of the history between Melvin Ramsay and the ME Association.

    My memory fails me - but if you can determine when he become involved with the MEA I would be obliged - was he even a founding member?

    The MEA still maintains the Ramsay Research Fund as it's research arm, and Melvin's family remain closely connected to that even now.

    You'd have to check the MEA website - and dig on the internet to see when the associations all began.

    I also would be interested to learn of the process of registration of ME in WHO in I think 1969. Just out of interest - and if ever you have the time.

    Thanks.
    Last edited: Feb 14, 2014
  11. alex3619

    alex3619 Senior Member

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    Melvin Ramsay wrote a book on all this, which I have not seen. I keep meaning to buy it.

    Neurological signs go back to 1955, though arguably this one could be metabolic or muscular or even vascular ... profound muscle weakness after activity.

    Photophobia is a neurological sign. Its a reflex, and can be seen by shining light in a patient's eyes ... quite painful I might add, if you have photophobia.

    Orthostatic intolerance is confirmed by a TTT but its not 100% effective. Some with OI seem to have normal TTT results.

    Lack of replication and follow up is a huge problem in ME research. It stems from profound lack of interest from authorities, whether interest by researchers, or interest by fund providers.

    I would like to track the use of polio vaccine and ME, as well as polio outbreaks and ME. We might learn something.

    Lesions on autopsy are not suspicious shadows on an MRI. Such lesions were even found in animals when injected with ME blood, back in 1955. In MS lesions typically mean demyelinization. In ME they seem to be about immune infiltration, not demyelinization, but we need more research, as always.

    "Benign" refers to typically not lethal. These days we know of probable deaths. Its also the WHO designation, not necessarily the designation from other sources. I think it should be dropped.

    Purely theoretical at this point, but the 2 day CPET showing profound crashes in energy might have serious implications for neurological capacity. Nerves are very vulnerable to low energy states. Now that the science implicates lactic acid as a neurological hormone .... things could get interesting.
    Last edited: Feb 14, 2014
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  12. Firestormm

    Firestormm Senior Member

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    After writing the above comment, I got my copy of Ramsay's book, which I actually proof-read when it was republished again last year for the ME Association. I will try and hook out some comments from it at some point, if it will help clarify things from his own perspective. Copies can be purchased still from the MEA for a couple of £ I think.
    WillowJ and alex3619 like this.
  13. alex3619

    alex3619 Senior Member

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    Its not funding that stopped me buying it, I have wanted this book for over six months now. Its that parcels are not delivered, and can be returned to sender.
    Firestormm likes this.
  14. WillowJ

    WillowJ Senior Member

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    I didn't know of a connection. All I know is that Achelson and Ramsay were among the first to make reports in the literature and textbooks. And that these kinds of reports would be what WHO would have used to make a listing. This was done in 1969, according to many sites.

    Some of Ramsay's writings are excerpted here:
    http://www.name-us.org/DefintionsPages/DefRamsay.htm

    Morris/Maes 2013


    I mentioned MEA as in "not MEA or whoever" because it seemed the most obvious British charity to "blame" falsely for interfering (as it is a large charity interested in biomedical stuff). Sorry if this was confusing.
    Firestormm likes this.
  15. Firestormm

    Firestormm Senior Member

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    I am just checking on the copyright situation. But will come back and post some extracts if and when I can.

    The book can - if you are able to have it delivered somewhere convenient, @alex3619 from here on page 7 and for £5 (though I didn't look at postage).

    Been a while since I read it cover to cover and that was in 2012 (thought it was last year) when I proofed prior to reprinting. I think it is worth a read, if only to better understand where Ramsay was coming from with regard to the ME he understood. He says in his introduction to the second edition, for example, how he regretted employing the terms 'post viral fatigue states' alongside ME when he originally wrote and published. This he felt (I am paraphrasing obviously) opened the door to the attachment of other perhaps non-ME-specific descriptions and/or resulting definitions.

    @WillowJ

    I did find this after a quick search of the MEA News archive:
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Extracts from my Dx Revision Watch post:

    http://wp.me/pKrrB-3Oe

    I am still seeing considerable confusion, misunderstanding and misreporting around what can and what cannot be determined from the public version of the ICD-11 Beta drafting platform on emerging proposals for revision of ICD-10′s Somatoform disorders.


    The term Bodily distress syndrome does not appear in the public version of the ICD-11 Beta drafting platform.

    The term entered into the Beta draft is Bodily distress disorder.

    • In September, Oye Gureje, who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders, will be presenting on “Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders” as part of a series of ICD-11 Symposia at the World Psychiatric Association’s XVI World Congress, in Madrid.

    • There are two working groups advising ICD-11 on the revision of ICD-10′s Somatoform disorders

    The Primary Care Consultation Group (PCCG);

    The ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG).

    • In 2012, the PCCG published a paper proposing a new disorder construct to replace ICD-10-PHC’s F45 “Unexplained somatic symptoms/medically unexplained symptoms” which the group proposed to call Bodily stress syndrome (BSS) [1].

    F48 Neurasthenia was also proposed to be eliminated for the ICD-11-PHC.

    • In 2012, the PCCG’s Bodily stress syndrome category was proposed to sit under a new Mental and behavioural disorder grouping called Body distress disorders, under which were grouped three other, unrelated disorders, like so:

    Extract: Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two] [2] Page 51, Table 2.5 The 28 Disorders Proposed for ICD11-PHC (the abridged Primary Care version of ICD-11)

    Body distress disorders

    15
    Bodily stress syndrome [Replaces F45 Unexplained somatic symptoms/medically unexplained symptoms]
    16 Acute stress reaction
    17 Dissociative disorder
    18 Self-harm

    [F48 Neurasthenia proposed to be eliminated for ICD11-PHC]

    So the PCCG group were proposing the use of a new term, Body [sic] distress disorders, as a disorder group name for a number of unrelated ICD-11-PHC primary care disorders, whilst proposing the term Bodily stress syndrome as a new ICD-11-PHC disorder category listed under that group.

    [Leaving aside the issue of the current lack of evidence for the validity, reliability and utility of the BSS construct, this presents providers, payers, coders and patients with potentially confusing terminology. Given there is already an operationalized definition and criteria for Bodily Distress Syndrome, WHO classification experts should have qualms about the potential for confusion between disorder group names and disorder category names, and between proposed disorder names that sound similar to, but which may lack conceptual congruency with similarly named disorders for which definitions and criteria have already been published and which are already in limited use in research and clinical settings.]

    • In 2012, the PCCG’s tentative new BSS disorder drew heavily on Fink et al’s Bodily Distress Syndrome’s (BDS) construct and criteria. Based on physical symptom clusters or patterns from various body systems and (theoretically) on the autonomic arousal or “over-arousal” illness model.

    Though not explicit, BSS appeared to have the capacity for capturing the so-called functional somatic syndromes; and in common with BDS, if the symptoms “were better accounted for by a known physical disease this is not BSS.”

    But the tentative BSS criteria also featured some DSM-5 SSD-like psychobehavioural characteristics, which do not form part of Fink et al’s BDS criteria. There were other, minor criteria discrepancies between BSS and BDS.

    • In 2012, the second working group, the S3DWG, also published a paper presenting a new disorder construct which they proposed to call Bodily distress disorder (BDD) [3]. Again, a similar term to one already in use.

    The S3DWG group proposed to subsume all of the ICD-10 Somatoform disorders categories of F45.0 – F45.9, plus F48.0 Neurasthenia, under a new, single BDD disorder category, with a number of severity specifiers (initially, Mild, Moderate and Severe).

    • But the S3DWG’s emerging BDD construct was quite different to the PCCG group’s BSS. It was characterized by a simplified criteria set based on excessive preoccupation and psychobehavioural responses to single or multiple, non specific bodily symptoms. The BDD construct shared characteristics with DSM-5′s Somatic symptom disorder (SSD) – not with Fink et al’s BDS.

    • In common with DSM-5′s SSD, the BDD diagnosis eliminated the “unreliable assumption of causality” and did not exclude the presence of a co-occurring physical health condition. BDD, as described in the 2012 Gureje, Creed paper, and Fink et al’s BDS are divergent constructs.

    • So by late 2012, there were two sets of recommendations – BSS, drawing heavily on Fink’s BDS model, but with a nod towards DSM-5′s SSD, and BDD – with notable similarity to DSM-5′s SSD.

    • In early 2012, the disorder name entered into the ICD-11 Beta drafting platform was Bodily distress disorder, (not Bodily stress syndrome or Bodily Distress Syndrome). No Definition for BDD was added at the time.

    • In early 2014, a Definition for Bodily distress disorder was inserted into the Beta drafting platform. The Definition wording was drawn from the Gureje, Creed (S3DWG) 2012 BDD paper, which had described an SSD-like disorder construct.

    • There is currently insufficient evidence in the Beta drafting platform to assert that, in the context of ICD-11 Beta drafting platform, BDD is being defined as a BDS-like construct. The defining BDD characteristics:

    high levels of preoccupation regarding bodily symptoms;
    unusually frequent or persistent medical help-seeking;
    avoidance of normal activities for fear of damaging the body;​

    are psychological and behavioural responses. Psychological and behavioural responses are not required for Fink et al’s BDS and these characteristics have greater congruency with DSM-5 SSD’s “B type”criteria. There is no evident requirement for symptom patterns or clusters from one or more body systems, as required to meet BDS criteria; examples of BDD symptoms are non specific and patients may be “preoccupied with any bodily symptoms.”

    From the limited content displaying in the Beta draft, it simply isn’t possible to determine that BDD, in the context of ICD-11 Beta draft usage, is being defined as a Fink et al BDS-like disorder construct.

    An additional layer of complexity: recently, the BDD severity specifier “Severe bodily distress disorder” has been removed from the draft and ICD-10′s Somatization disorder reinserted. Neurasthenia, previously proposed by both groups to be eliminated or subsumed for ICD-11, has also been inserted back into the Mental and behavioural disorders chapter, which is (currently numbered Chapter 06).

    [​IMG]

    Image source: Chapter 06: Neurasthenia, ICD-11 Beta drafting platform at March 17, 2014

    The Definition assigned to Somatization disorder remains unrevised from legacy text recently imported, unedited, from ICD-10. It is currently unclear how Somatization disorder and Neurasthenia are now intended to integrate within the core ICD-11 and the ICD-11 Primary Care framework, given that a new, single disorder construct had earlier been proposed by both groups to subsume Somatization disorder and all of the ICD-10 Somatoform Disorders categories between F45.0 – F45.9, and to subsume F48.0 Neurasthenia.

    No other F45.x categories have been restored to the Beta draft. (There is a reference in the legacy Definition for Somatization disorder to F45.1 Undifferentiated somatoform disorder but this text has yet to be edited from the text as it had stood under ICD-10′s Somatoform disorders framework.)

    • The development of a replacement for the ICD-10 Somatoform Disorders is a work in progress and proposals may go through several iterations over the next two or three years. The two groups may or may not be striving to reach consensus. The construct favoured by ICD-11 Revision Steering Group may or may not be the construct that is put out for initial field testing.

    • Without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc, there is currently insufficient content in the Beta drafting platform to determine the precise nature of whatever construct and criteria is currently favoured by ICD-11 Revision Steering Group; or whether the two groups have reached consensus over a new disorder name and concept; or whether and to what extent the groups’ two (divergent) constructs have been revised since publication of their respective 2012 papers.

    Possibly the ICD-11 Symposium IV presentation, later this year, in Madrid, may elucidate. If there is a transcript, summary report or presentation slides of Dr Oye Gureje’s presentation to the World Psychiatric Association XVI World Congress in September, I will post presentation materials, when available. There are some additional notes below the WPA XVI World Congress details.

    Notes:

    The ICD-11 Primary Care Consultation Group:

    The 12 member PCCG leads the development and field testing of the revision of all 28 mental and behavioural disorders proposed for inclusion in the next ICD primary care classification (ICD-11-PHC), an abridged version of the core ICD-11 classification. Per Fink’s colleague, Marianne Rosendal, is a member of the PCCG group.

    The members of the PCCG are: SWC Chan, AC Dowell, S Fortes, L Gask, D Goldberg (Chair), KS Jacob, M Klinkman (Vice Chair), TP Lam, JK Mbatia, FA Minhas, G Reed, and M Rosendal.

    New disorders that survive the primary care field tests must have an equivalent disorder in the main ICD-11 classification.

    The PCCG’s 2012 paper on emerging proposals for BSS and international focus group responses to these tentative proposals can be accessed for free here:

    http://fampra.oxfordjournals.org/content/30/1/76.long

    http://fampra.oxfordjournals.org/content/30/1/76.full.pdf html


    The ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders:

    The second sub working group advising on the revision of ICD-10′s Somatoform Disorders is the 17 member Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG).

    The S3DWG is chaired by Prof Oye Gureje. DSM-5 Somatic Symptom Disorder (SSD) work group member, Prof Francis Creed, is a member of this group. Other than Athula Sumathipala, MD, PhD (UK) and Joan E. Broderick, PhD (Stony Brook University, NY) all other members of this sub working group have yet to be identified. Their names are not listed in the Gureje, Creed 2012 paper [3] and a list of members is not available from the ICD Revision website.

    The term entered into the Beta draft is Bodily distress disorder not Bodily stress syndrome or Bodily Distress Syndrome.

    Current Definition for Bodily distress disorder, as displaying in the Beta draft at March 16, 2014:

    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).​

    This BDD Definition wording is based – in some places verbatim – on the construct descriptions presented in the Gureje, Creed (S3DWG) “Emerging themes…” paper, published in late 2012 [3]. Unfortunately this journal paper remains behind a paywall but I do have a copy.

    Extract, Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012:

    “…At the time of preparing this review, a major highlight of the proposals of the S3DWG for the revision of the ICD-10 somatoform disorders is that of subsuming all of the ICD-10 categories of F45.0 – F45.9 and F48.0 under a single category with a new name of ‘bodily distress disorder’ (BDD).

    “In the proposal, BDD is defined as ‘A disorder characterized by high levels of preoccupation related to bodily symptoms or fear of having a physical illness with associated distress and impairment. The features include preoccupation with bothersome bodily symptoms and their significance, persistent fears of having or developing a serious illness or unreasonable conviction of having an undetected physical illness, 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 of functioning or frequent seeking of reassurance.’”

    This 2012 paper goes on to say that the S3DWG’s emerging proposals specify a much simplified set of criteria for a diagnosis of Bodily distress disorder (BDD) that requires the presence of:

    1. High levels of preoccupation with a persistent and bothersome bodily symptom or symptoms; or unreasonable fear, or conviction, of having an undetected physical illness; plus,

    2. The bodily symptom(s) or fears about illness are distressing and are associated with impairment of functioning.

    And that in doing away with the “unreliable assumption of its causality” the diagnosis of BDD “does not exclude the presence of depression or anxiety, or of a co-occurring physical health condition.”

    This is not a BDS model – it’s a disorder framework into which DSM-5′s “Somatic Symptom Disorder” (SSD) could comfortably be integrated, thus smoothing harmonization between ICD-11 and DSM-5.

    (If you want to compare the extent to which the BDS construct and criteria diverges from DSM-5′s SSD construct and criteria, see my graphic here.)

    For the S3DWG’s emerging proposals for BDD, as presented in late 2012, there was no evident requirement for specific symptom counts, or for BDS-like symptom clusters from one or more body systems. Examples of symptoms are non specific and patients may be “preoccupied with any bodily symptoms.”

    As with DSM-5′s SSD, the focus was not on the number of symptoms, or on symptom patterns or clusters from one or more body systems, or whether symptoms were determined as “medically explained” or “medically unexplained” or of undetermined aetiology, but on the perception of “disproportionate” and “maladaptive” responses to, or “excessive” preoccupation with any troublesome chronic bodily symptom(s).

    So in 2012, the two groups lacked agreement not only over what to call any new, single disorder replacement for ICD-10′s Somatoform disorders, but also on what disorder construct and criteria should be recommended to ICD Revision.

    Given that the wording of the Definition for Bodily distress disorder as entered into the draft, in January, is based on text from the Gureje, Creed 2012 paper, which had described an SSD-like construct, one might argue that the disorder name and Definition currently displaying in the draft potentially better describes an SSD-like construct – not Fink et al’s BDS.

    And with the recent reintroduction into the Beta drafting platform of Somatization disorder and Neurasthenia, one might further argue that there is perhaps a recent consideration for a construct that doesn’t veer too far away from the status quo, which could be moulded to accommodate selected of the ICD-10 legacy Somatoform disorders categories, but which removes the requirement for symptoms to be “medically unexplained” in order that SSD might be shoehorned into an ICD-11 framework for “harmonization” with DSM-5.

    But at the moment and in the absence of documentary evidence or clarification by WHO/ICD Revision, what cannot safely be said is that in the context of ICD-11 usage, Bodily distress disorder equates with Fink et al’s Bodily Distress Syndrome.

    Caveats: The ICD-11 Beta drafting platform is not a static document: as a work in progress over the next two to three years, it is subject to daily edits and revisions, to field test evaluation and to approval by Topic Advisory Group (TAG) Managing Editors, ICD Revision Steering Group and WHO classification experts.


    References:

    1. 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: http://www.ncbi.nlm.nih.gov/pubmed/22843638
    Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long
    PDF: http://fampra.oxfordjournals.org/content/30/1/76.full.pdf html

    2. Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two] http://samples.jbpub.com/9781449627874/Chapter2.pdf

    3. 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 [Abstract only. Full text behind paywall]

    4. ICD-11 Beta drafting platform public version: Bodily distress disorder: http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/767044268
    Last edited: Mar 23, 2014
    Esther12 likes this.
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I make no apologies for the length of the above post, but if you prefer a skinny version:

    Dx Revision Watch’s 12 Point Skinny on ICD-11:

    http://wp.me/pKrrB-3Mk

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

    The potential revision/replacement for the existing ICD-10 Somatoform disorders categories for ICD-11 is a very complex issue.

    It is more complex than the revision of the SDs for DSM-5 has been because for DSM-5, there were two progress reports published, conference presentations, journal papers, and three static drafts released for public scrutiny and comment. For the first two DSM-5 draft review exercises, PDF documents setting out disorder descriptions and rationales were also published which expanded on the draft proposals - so we had a good understanding of what was being proposed, the SSD Work Group's rationales for what was being proposed, and the proposed criteria sets.

    For the ICD-11 Beta, that level of information isn't currently available and the Beta drafting platform isn't a static document - it's revised daily and the public version currently contains very little information. (The ICD Revision advisory group Managing Editors are developing the draft on more complex multi-author platform, which the public does not have access to. On that platform, change histories can be tracked and notes about proposed changes and the reasons for changes are made as the draft is revised.)

    The potential revision of the SDs for ICD-11 does not lend itself to a couple of posts on Twitter or to brief media articles, especially given that there are two working groups making recommendations and there have been two sets of proposals. And these will have been revised since 2012. It doesn't help either, that one of the key papers is behind a paywall and the other paper, the Lam et al paper, has only recently had its paywall lifted.

    It isn't currently known what the Primary Care Consultation Group are now proposing (the BSS construct in 2012) or how the BDD group envisages Somatization disorder and Neurasthenia would related to their BDD construct and definition (as inserted into the Beta platform, earlier this year). And the draft is fluid - there was another small change just yesterday.

    If writing about complex classificatory revision processes, I suggest people first familiarize themselves with how the several ICD-11 Beta drafting platform linearizations function and interrelate; that they inform themselves about the proposals of both ICD-11 working groups that have been charged with making recommendations for potential revision of the Somatoform disorders, and that they obtain and scrutinize two key journal papers on emerging proposals that were published by members of both working groups in 2012; and that for comparison, they have an understanding of the existing F45 Somatoform disorders framework and the disorder descriptions and criteria for categories located within this section of ICD-10, in order that they can provide evidenced based, accurate and up to date information and analysis, within the limitations of what information is public domain.

    They also need to be familiar with the criteria for DSM-5's Somatic symptom disorder and to appreciate how SSD differs from Fink's BDS criteria (and it differs significantly); how SSD differs from the Gureje, Creed group's BDD construct; how BDS differs from BDD, in the context of ICD-11 usage; how BSS differs from BDS and how BSS differs from BDD.

    Otherwise you cannot write meaningfully about proposals.

    For those not aware, the article to which Firestormm has linked was pulled a day or two after publication.

    On February 12, the admin for the WHO's Twitter site posted the following in reply to enquiries by several members of the public:

    ‘Fibromyalgia and ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11’.
    On February 26, I submitted a formal query [Query Ref: DE00000844965] to the office for Ministerial Correspondence and Public Enquiries, Department of Health, in relation the Oral Answer to Annette Brooke MP Oral Question of February 25.

    On March 17, I was advised office for Ministerial Correspondence and Public Enquiries that on February 13, Mr Gregory Härtl, Head of Public Relations/Social Media at WHO had also responded, on Twitter, to a posting of a link to a (since closed) online petition.

    Mr Härtl’s response needs to be read in the context of the tweet to which he had responded, but he stated:

    ‘there is and never was any intention to [reclassify Fibromyalgia and ME/CFS as a Mental and Behavioural Disorder]’.
    These replies on behalf of WHO/ICD Revision are no substitute for the full clarification I have been attempting to obtain from ICD Revision since June 2013, for the absence of the three G93.3 terms from the public version of the ICD-11 and for ICD-11 Revision's intentions for these three terms.

    On March 18, Sonya Chawdhury, CEO, Action for M.E., released an Open Letter to Dr Ra’ad Shakir, Chair, ICD-11 Revision Topic Advisory Group for Neurology.

    The Open Letter has been copied to Tarun Dua, Managing Editor, Neurology Topic Advisory Group, WHO; Christopher Chute, Chair, ICD Revision Steering Group, WHO; Dr Geoffrey Reed, Senior Project Officer, International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, ICD-11, WHO; Dr Margaret Chan, Director General, WHO; Dr Robert Jakob, MD, Medical Adviser, WHO.

    The letter which has been produced collectively, is signed by Sonya Chawdhury, CEO, Action for M.E., Annette Brooke MP, Chair of the All Party Parliamentary Group on M.E., the Countess of Mar, Chair of the House of Lords-led group Forward ME, and Dr Charles Shepherd, Medical Adviser of the ME Association who, like Sonya Chawdhury, is a member of the APPG secretariat.

    In the interests of transparency, I acted in an advisory capacity in the preparation of this joint letter in respect of existing ICD-10 coding, proposals for the G93.3 terms for ICD-11, as they had stood in January 2013, and around Beta drafting platform technicalities.

    A PDF and text version of this collaborative initiative can be read in this post on my site:

    Joint Open letter to WHO/ICD Revision over classification of absent G93.3 terms for ICD-11 Beta draft

    http://wp.me/pKrrB-3Pp

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

    In another thread, Ms Swift had stated that she was already familiar with my website. When researching her article, had Ms Swift approached me for clarifications and information on the current status of proposals for the potential revision of ICD-10's Somatoform disorders and the F45 and F48 categories in ICD-10-PHC (the abridged Primary Care version of ICD-10) I would have been happy to have briefed her with accurate information, as it stood in 2012, and as it currently stands - but I was not approached.

    Suzy Chapman, Dx Revision Watch
    Esther12 likes this.

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