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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 dxrevisionwatch.com

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    If the proposals of the DSM-5 SDD Work Group are approved, they'll be grabbing 'em back...

    Parkinsons + Complex somatic symptom disorder
    Diabetes + Complex somatic symptom disorder
    MS + Complex somatic symptom disorder
    Heart disease + Complex somatic symptom disorder
    RA + Complex somatic symptom disorder

    CFS + Complex somatic symptom disorder
    FM + Complex somatic symptom disorder
    IBS + Complex somatic symptom disorder
  2. biophile

    biophile Places I'd rather be.

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    The problem is being promoted as a solution

    This just says it all ...

    [​IMG]

    "MUS a major problem in medicine: Why such little progress in explaining?" [...] The way ahead: A Psychosomatic perspective". Because the "psychosomatic perspective" has done such wonders for medical discovery in the past century??? There has been such little progress in explaining because the psychosomatic perspective has dominated at the expense of biomedical research.

    What we need is a major increase in real biomedical research, and once that is established, there is no problem with appropriate (bio)psychosocial research. In times gone by the public used to call doctors "quacks", but biomedical research saved them from these dark times. The problem now is the medical profession does not care much for "medically unexplained symptoms" and just pass it onto the fringe subfield of psychiatry, which appears to remain several decades behind other areas of medicine. Even "psychiatric disorders" could do with more biomedical research.

    Maarten mentions the KCL website. I remember reading about some ridiculous claims on the KCL website a while ago, but I just had a brief skim of their CFS information area and I could not find anything that would sound outrageous to outsiders. However, I noticed on their "Physiological Aspects of CFS" page ( http://www.kcl.ac.uk/projects/cfs/patients/physiology.html ) an almost total lack of what we would usually think of as the physiology of CFS. It is written by "Mary Burgess PhD - based on the work of Pauline Powell."

    It basically describes the assumed similarities between CFS and the behavioural-physiological consequences of deconditioning, anxiety, hyperventilation, stress, depression and circadian rhythm disturbance (similar to the Liverpool CFS treatment booklet?). Then of course there is the following sentence in bold: "It is important to point out that these changes are reversible with physical rehabilitation and/or exercise." The rest of the information section is written by Vincent Deary, parts of his writing sound quite reasonable except when it ventures into dross.

    On the KCL website they claim rehabilitation leads to substantial improvements to the majority of patients. Biopsychosocialists typically claim CBT/GET results in recovery or major improvement to most patients (70% figure is often given as a matter of fact). So what is the "evidence base" for these claims in the mainstream literature?

    The 2008 Cochrane systematic review of CBT research concludes, at post-treatment there was a small effect on reported "fatigue" and (for a minority of patients ie 40% for CBT vs 26% no therapy) "clinical response", but no significant effect on physical functioning etc, inconclusive evidence for any long term benefits on any measurement, mostly non-CDC criteria studies used to calculate the reported benefits ( http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001027/frame.html ). A 2010 meta-analysis of 3 CBT trials which used actigraphy, "Although CBT effectively reduced fatigue, it did not change the level of physical activity." ( http://www.ncbi.nlm.nih.gov/pubmed/20047707 ). A 2006 systematic review concludes no intervention (including CBT) had been proven to restore the ability to work ( http://jrsm.rsmjournals.com/cgi/content/full/99/10/506 ). What ever happened to "reversing the changes"?

    PS - Does anyone have any references to comprehensive material about the historical psychologisation of disease?
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes, it's a dreadful read - Pauline Powell is Liverpool and works with researchers from U of Manchester - FINE Trial, Wearden, Bentall et al.

    It might amuse you to know that in June 2004, I got the whole of that article published within the text of a BMJ Rapid Response. For years, the last paragraph of the Burgess article was littered with typos. These were finally cleaned up when the KCL website was given a make-over a year or two ago.

    Now I must be off - there are ships to launch.


    http://www.bmj.com/cgi/eletters/328/7452/1354#62421

    Jam on both sides?
    Suzy Chapman

    10 June 2004

    I'd like to draw readers' attention to the following document which can be found on a website called "Chronic Fatigue and Chronic Fatigue Syndrome A Practical Self Help Guide". It is entitled:

    "PHYSIOLOGICAL ASPECTS OF CHRONIC FATIGUE SYNDROME Explaining the symptoms of CFS: An article explaining the physiological basis of some of the more common, and some of the more obscure, symptoms that trouble CFS sufferers"

    This is such a curious document that I have taken the liberty of reproducing it in full since I feel it deserves a wider audience.

    The document lists many of the symptoms which may be experienced by sufferers of CFS and goes on to explain every single one of them in terms of "deconditioning", "faulty illness beliefs" or anxiety.

    And it makes some very sweeping statements indeed, for example: "As we said there is nowgood [sic] evidence to show that all of the above effects are reversoble [sic] by a programme of gradual physical rehabiliation [sic]. Learning to spot and deal with sources of stress is also important. Lastly, not worrying too much about symptoms is probably crucial The more one worries about a symptom, the more one focuuses [sic] on it, and the more stress this generates, which in turn worsenes [sic] the symptom."

    Is this document referenced throughout with research papers? No, not a single reference.

    Has it been carefully checked for typos, as one might expect in a serious and professional document? Apparently not.

    So has this document been posted on the net by a 'non professional'? Well no, it is taken from the website of Kings College Hospital's Chronic Fatigue Syndrome Research and Treatment Unit.

    And this is where is starts to become confusing, because click on the link "About this unit and its research" and you'll be taken to a page listing recent research papers - neuroendocrinological research, neuropsychological research, research into infectious agents, epidemiological research, immunological research etc.

    As the site says, research costs money and grateful thanks are expressed to a number of organisations who support the Kings CFS research programme - The Linbury Trust, Pfizer UK, Shire Pharmaceuticals, South Thames Locally Organised Research Scheme and The Wellcome Trust.

    So here we have a CFS Research Unit headed up by Professor Simon Wessely with Dr Trudie Chalder and colleagues beavering away on the one hand on costly research programmes into an illness the symptoms of which they are simultaneously peddling on the Unit's own website as being caused and maintained by nothing more than "deconditioning", "faulty illness beliefs" and anxiety - and which are "all reversible by a programme of gradual physical rehabilitation".

    It's a rum do, as my old grandad used to say.

    http://www.kcl.ac.uk/cfs/symptoms.html

    PHYSIOLOGICAL ASPECTS OF CHRONIC FATIGUE SYNDROME

    Many people with CFS are concerned that their distressing symptoms may be related to a disease that hasn't been detected. Others are concerned that a virus (if one occurred at onset) is still present or has caused physical damage to the body. However, intensive research has tried to establish whether disease, deficiencies or any other abnormal changes in the body may explain the very distressing and debilitating symptoms experienced by people with CFS. To date, it appears that there is no one cause of CFS. Patients complain of a variety of different triggers, e.g. different types of infection or stressful life events. Some sufferers can pinpoint the exact date that it started. For others the onset is more gradual.

    etc
    WillowJ likes this.
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    BMJ Rapid Response

    I also had another response published that week:

    http://www.bmj.com/cgi/eletters/328/7452/1354#61749

    Re: Medical Correctness
    Suzy Chapman

    5 June 2004

    Peter Culdrose [eBMJ RR: Re: Medical Correctness, 4 June] reminds psychiatrist Barrington Johnson* of the erroneous aetiologies originally ascribed by the medical profession to MS and polio.

    To these, Mr Culdrose might also have added the so called 'refrigerator mothers' of children with autism spectrum disorders.

    Many readers will also be aware that the shaking hands observed in Parkinson's Disease were at one time attributed by the medical profession to the repressed desire to perform a certain activity.

    I feel sure that Barrington Johnson will be familiar with this, too.

    Competing interests: None declared

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

    *Barrington Johnson, psychiatrist had, in the previous week's BMJ Rapid Response correspondence, signed his response as "Fred Johnson, physician" so we considered that he might be a psych or a psyock.[1]

    [1] http://bmj.bmjjournals.com/cgi/eletters/328/7452/1354#61609 and
    http://bmj.bmjjournals.com/cgi/eletters/328/7451/1271#60751
  5. biophile

    biophile Places I'd rather be.

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    Interesting, Suzy. One can only hope the frequent spelling errors are not indicative of the conceptual sloppiness we tend to see in biopsychosocial articles.
    WillowJ likes this.
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Scandinavian neuropsychopharmacology

    Michael Sharpe has his name on this Schrder, Fink et al paper


    PDF: http://scnp.dk/journal/index.php/SCNP/article/viewFile/105/5

    SCANDINAVIAN NEUROPSYCHOPHARMACOLOGY

    2010 VOL 3

    Page 13

    The STreSS-1 trial: an example of a novel unified treatment approach for functional somatic syndromes

    Andreas Schrder, Emma Rehfeld, Eva rnb, Michael Sharpe, Ramus W. Licht, Per Fink

    Treatments based on active patient involvement like exercise and cognitive behavioural therapy have proven effective in various functional somatic syndromes (FSS) such as fibromyalgia and irritable bowel syndrome. However, the delivery of such treatments is problematic. This is because FSS are typically managed in secondary care medical services which are organised into disease-focussed medical specialties. Recently, bodily distress syndrome was introduced as a unifying diagnostic category that covers most FSS etc

    The Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark, The Research Clinic for Functional Disorders and Psychosomatics Aarhus University Hospital Noerrebrogade 44 8000 Aarhus C, Denmark andreas.schroeder@aarhus.rm.dk


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

    and from 2007:

    PDF:http://www.urotoday.com/index2.php?option=com_content&do_pdf=1&id=2205779

    Symptoms and Syndromes of Bodily Distress: An Exploratory Study of 978 Internal Medical, Neurological, and Primary Care Patients
    Contributed by Philip M. Hanno, MD
    Wednesday, 02 May 2007

    BERKELEY, CA (UroToday.com) - The introduction of this fascinating exploratory study of almost 1000 internal medical,
    neurological, and primary care patients states the following: "Medically unexplained or functional somatic symptoms are
    complaints defying the clinical picture of known, verifiable, conventionally defined diseases and unbacked by clinical or
    paraclinical findings.

    They are prevalent in all medical settings and may be persistent, disabling, and costly." Specifically, Fink and colleagues
    from Denmark are referring to chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, chronic benign pain
    syndrome, and other somatoform disorders. One cannot help but notice that many of these syndromes have been
    associated with bladder pain syndrome (PBS/IC).

    In this study, the 978 patients consecutively admitted from a neurological department, a medical department, and from
    one primary care were interviewed using the Schedules for Clinical Assessment in Neuropsychiatry diagnostic instrument
    (SCAN). Patients complained of a median of 5 functional somatic symptoms. No single symptoms stood out as
    distinctive for patients with multiple symptoms. Principal component factor analysis identified a cardiopulmonary
    including autonomic, a musculoskeletal, and a gastrointestinal symptom group explaining 36.9% of the variance. Latent
    class analysis showed that the symptom groups are likely to materialize in the same patients, suggesting that they are
    different manifestations of a common latent phenomenon.

    Latent class analysis using inclusion of a group of 5 additional general unspecific symptoms allowed construction of
    clinical diagnostic criteria for "bodily distress disorder." Patients were divided into nonbodily distress (589), modest bodily
    distress (329) and severe bodily distress (60). The latter categories had a prevalence of 25% and 3% respectively.

    The authors believe their data supports previous findings that the existence of specific functional somatic syndromes is
    an artifact of medical specialization. They identified a general, distinct, bodily distress syndrome or disorder
    encompassing the various functional syndromes advanced by medical specialties as well as somatization disorder and
    related diagnoses of the psychiatric classification. The syndrome can manifest as gastrointestinal, cardiopulmonary, or
    musculoskeletal problems.

    While in no way referring to painful bladder/interstitial cystitis, the authors have taken a novel way of looking at a variety
    of syndromes often seen to accompany PBS/IC. Many are looking for a new paradigm within which to place the myriad
    of symptoms and problems associated with painful bladder patients, and this is seemingly a start.

    Per Fink, Tomas Toft, Morten Steen Hansen, Eva rnbl, and Frede Olesen

    Psychosomatic Medicine, 69(1):30-39, 2007

    UroToday.com Painful Bladder Syndrome Section
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    APA/WHO/NIH Symp: Somatic Presentations of Mental Disorders

    In September 2006, an APA/WHO/NIH symposium was held in Beijing as one 12 APA research planning conferences towards DSM-5.

    The DSM-5 Work Groups were assembled in 2007 and the names of their members, biosketches and disclosures were released in May 2008.

    http://www.dsm5.org/Research/Pages/SomaticPresentationsofMentalDisorders(September6-8,2006).aspx

    Somatic Presentations of Mental Disorders (September 6-8, 2006)

    Prepared by Michael B. First, M.D., DSM Consultant to the American Psychiatric Institute for Research and Education (APIRE), a subsidiary of the American Psychiatric Association

    "The APA, in collaboration with the WHO and NIH, convened a diagnosis-related research planning conference focusing on somatic presentations of mental disorders in Beijing, China, on September 6-8, 2006. The conference was the eighth in a series of 12 NIH-funded conferences on "The Future of Psychiatric Diagnosis: Refining the Research Agenda" that is administered by APA's American Psychiatric Institute for Research and Education (APIRE). The Somatic Presentations conference co-chairs were Joel Dimsdale, MD, University of California San Diego (La Jolla, CA), Yu Xin, MD the Institute of Mental Health Peking University Bejing, China), Arthur Kleinman, MD, Harvard University (Cambridge, MA), and Vikram Patel, PhD, London School of Hygiene and Tropical Medicine (London, UK). Twenty-eight invited scientists from around the world participated."

    Ed: On the APA's DSM-5 website you can read summaries of the presentations by:


    Ricardo Araya MD (Bristol, UK)

    Simon Wessely, MD (London, UK)

    Laurence Kirmayer MD (Montreal, Canada)

    Javier Escobar, MD (Piscataway, NJ) [Ed: DSM-5 Task Force member and Task Force liaison to DSM-5 SSD Work Group]

    Elizabeth Lin MD (Seattle, WA)

    Sing Lee, FRCPsych (Hong Kong, China) [Ed: DSM-5 Task Force member]

    Joel Dimsdale, MD (La Jolla, CA) [Ed: DSM-5 Task Force member and Chair, DSM-5 SSD Work Group]

    Michael Sharpe MD (Edinburgh, Scotland)

    Deborah Hasin, PhD (New York, NY)

    Winfried Rief, PhD (Marburg, Germany)

    Athula Sumathipala, MD (London, UK)

    Richard Mayou FRCPsych (Oxford, UK)

    Kurt Kroenke MD (Indianapolis, IN)


    "Upon conclusion of the presentations, participants reconvened in two breakout groups to formulate recommendations for research and suggestions for future versions of the classifications of mental disorders (e.g. in the DSM-V, ICD-11 and others). The first group noted that the classification of somatoform disorders in all of the available systems (i.e., DSM-V, ICD-10, CCMD-3) reproduce dualism, none are acceptable to the vast majority of patients, and all are too complex to be used by those who need to use them (e.g., primary care physicians). Possible improvements include 1) changing hypochondriasis to "health anxiety;" 2) producing specific mediating criteria for psychological, behavioral, or cognitive symptoms on axis I (e.g., fibromyalgia on axis III, avoidance behavior on Axis I); 3) continuing to include on Axis I a multi-symptom, chronic somatization-like disorder category with a better name (suggestions included "somatic distress disorder" and "somatic syndrome disorder") ; 4) considering the elimination of clauses in the diagnostic criteria requiring that "the symptoms cannot be fully explained by a known general medical condition" and 5) reconsidering the value of the neurasthenia diagnosis. Future research should focus on 1) developing a new definition for a polysymptomatic disorder; 2) operationalizing the psychological, behavioral, social, and health-seeking behaviors that characterize an axis I somatoform disorder; 3) getting stakeholder views (GPs, physicians, and patients) on classification before we tell them what to do; and 4) extending the WHO primary care study to include somatoform disorders.

    "The second breakout group noted that while the category of somatoform disorders has the advantage of emphasizing the salience of psychosocial issues in medical conditions, disadvantages and limitations include 1) unfamiliarity on the part of primary care physicians with these diagnoses; 2) limited explanatory power compared to traditional medical terms; 3) inclusion in this category of a mixed bag of conditions, each of which is heterogeneous, (e.g., IBS), and some of which are better known or studied by certain sectors; 4) an implied psychogenic component, which perpetuates body-mind dualism; and 5) the requirement for ruling out of medical diseases is especially difficult in developing world. The group's suggestions included: 1) use words that make sense to patients; 2) maintain better links with physicians and conduct collaborative research; 3) make the system simpler for clinicians to use while considering a multiaxial approach for researchers; 4) split or reposition the mix of conditions (i.e., BDD, conversion, somatization disorder are very rare in the community compared to somatic symptoms); 5) develop cross-culturally sensitive text descriptions; 6) clarify the concepts first before framing research questions; and 7) consider possible new names for this category including "somatic syndrome disorder," "neurosis," "psychosomatic disorder," and "somatoaffective syndromes."

    "Selected papers based on the presentations will be published in a future volume of the journal Psychosomatic Medicine (Summer 2007) and all papers will appear in a monograph published by American Psychiatric Publishing, Inc."
  8. Jerry S

    Jerry S Senior Member

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    I think the usual expression is, "How many angels can dance on the head of a pin?" Originally, it was the point of a needle.

    http://www.straightdope.com/columns...-many-angels-could-dance-on-the-head-of-a-pin

    First, I think it should be established that angels can dance. LOL
  9. Angela Kennedy

    Angela Kennedy *****

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    ROFL...

    (Perhaps we should put that question to the BS forum though...they'll surely know)


    Also Suzy - thought this one was a classic, from the Somatic Presentations of Mental Disorders (September 6-8, 2006):


    "...the category of somatoform disorders...disadvantages and limitations include...an implied psychogenic component, which perpetuates body-mind dualism..."

    Now THAT'S worth an LMAO!
  10. Dolphin

    Dolphin Senior Member

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    There's a quite long article (110 references) at: http://freespace.virgin.net/david.axford/psy-algy.htm . A lot of it has to do with ME and CFS.
  11. biophile

    biophile Places I'd rather be.

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  12. bluebell

    bluebell Guest

    Can't imagine what the hold up is, with great minds like this in the mix. I propose that all known diseases have one uniting behavioral cause. Once we get patients to see the that the habitual breathing of air is to blame for all their symptoms, I know that the world will be rid of insufferable, whining cancer, AIDS and CFS patients. Then the psychiatrists can smoke their cigars in peace.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Fink is quite right that "Chronic Fatigue Syndrome" is an "invented" "pseudonym"- a pseudonym for ME, not somatization.

    Although, as he says, he's taken great care to craft a new name acceptable to patients, for some reason I like ME better than "body distress syndrome".

    That whole ICD book set is so bulky, why don't we just collapse all diseases into one diagnostic entity termed "loco". Patients will love this and it will really streamline treatment and insurance transaction costs as all insurance payouts will be denied. I bet I could work this musing up into an article in five minutes and get it fast-track published in BMJ.
  14. Dolphin

    Dolphin Senior Member

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    :D
  15. Angela Kennedy

    Angela Kennedy *****

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    I like it! We could also do it for the new DSM. Only one criteria that needs to be filled: in clinical judgement of psych, patient is 'loco'. And the BMJ could write a supportive editorial as well!
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Vintage Psychiatric Times article from 2006

    Worth a skim, if your BP can stand a hike.

    Vintage Psychiatric Times article from 2006 flagged up by Psychiatric Times on Twitter, 29 April:


    http://www.psychiatrictimes.com/conversion-disorder/content/article/10168/51221?pageNumber=1

    A Case of Pseudosomatization Disorder


    By Sara Epstein, MD | 01 September 2006
    Dr Epstein is in private practice in Los Angeles.


    I read with interest Dr McCarron's article (Psychiatric Times, May 2006, page 32), "Somatization in the Primary Care Setting" an important topic indeed.

    He described irritable bowel, chronic fatigue, and fibromyalgia syndromes as systems developed by medical specialists to describe unexplained somatic symptoms. However, chronic fatigue and fibromyalgia are codified diseases with specific criteria...

    Full article here: Pseudosomatization Disorder http://cot.ag/dfkzpd
  17. fred

    fred The game is afoot

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    So gratifying to read that the economic and financial costs to society of 'unexplained illnesses' are put ahead of the pain and suffering of patients.
  18. fred

    fred The game is afoot

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    I dreamed last night that I'd read this only to find this morning that I actually had.

    Am I being particularly foggy or are you saying that the DSM-V SSD workgroup has suggested, in all seriousness, that these illnesses be classified as 'CSSD'?

    Tibetan face mask, anyone?

    [​IMG]
  19. Mithriel

    Mithriel Senior Member

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    Fred, just search the web for "pseudo epilepsy" and you will see that they already have done that sort of thing.

    I read that many people with epilepsy also get pseudo epilepsy but you can get pseudo epilepsy by itself.
    As far as I can tell these seizures are "pseudo" because patients don't burn themselves on cookers or bang their heads, but fall more safely. With what they know about blindsight and all those other strange things in the brain it is perfectly possible for the brain to move the body from immediate danger while the seizure is building up, but the psyches say it is somatisation.

    The pseudo coma is worse. That is when your eyes roll the wrong way when you are in a coma and it is also classed as somatisation. Maybe the eye roll thing is a sign of a different type of coma but that would be too simple for our gallant experts.

    I get so angry when they only consider certain superficial symptoms of CFS, IBS and so on. If you are only going to consider the same symptoms in an illness then they are bound to all seem the same.

    We need a banging your head against a brick wall icon :Retro mad:

    Mithriel
  20. fred

    fred The game is afoot

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    We need a banging a psychiatrist's head against a brick wall icon.
    WillowJ likes this.

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