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Why Bioethics Should Be Concerned With Medically Unexplained Symptoms. (2018) O'Leary

Discussion in 'Health News and Research unrelated to ME/CFS' started by Cheshire, May 1, 2018.

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  1. Cheshire

    Cheshire Moderator Staff Member

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    https://www.ncbi.nlm.nih.gov/pubmed/29697324
    (Not available on SH)
     
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  2. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    What does SH stand for?

    Edit : Just worked it out - Sci-Hub.
     
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  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  4. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Having just read the paper, what I would like to know (and the paper didn't cover it) is what patients are supposed to do if they think they are being fobbed off as a mental case, when the physical problems they have are severe. If a patient thinks that they are classified as having an MUS (psychiatric) problem which required a prescription for anti-depressants and a dismissal, what should they do about it? How are patients supposed to overcome this? There appears to be no way back for patients once they have one of the various euphemisms for MUS on their notes.

    Edit : Typo
     
    Last edited: May 1, 2018
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  5. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I found that article incredibly interesting, @Snow Leopard , thanks for posting it. I loved the poem at the bottom, too :

     
  7. Inara

    Inara Senior Member (Voting Rights)

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    @Snow Leopard, thank you for linking this article - it is superb. I like the combination of art and the explanation what is meant. I also love the poem at the end:

    Edit: @Arnie Pye was faster :)
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "
    Finally, it is important to note that public concern
    about error of this kind is heating up with respect to myalgic
    encephalomyelitis/chronic fatigue syndrome (ME/
    CFS).

    In the last few years, the U.S. Academy of Medicine
    (Institute of Medicine 2015), National Institutes of Health
    (Green et al. 2015), and Department of Health and Human
    Services (Chronic Fatigue Syndrome Advisory Committee
    2015) have embraced the conclusion that it is now a
    “misconception” to understand ME/CFS as a psychogenic
    illness (Institute of Medicine 2015, 2).

    This dramatic reversal of opinion leaves patients, physicians, and policymakers
    scrambling to make sense of patients’ right to
    access biological care in countries where researchers disagree
    with U.S. authorities. Outcomes in this controversy
    will have a powerful impact on public debate about access
    to biological care for other contested conditions, such as
    fibromyalgia and chronic Lyme disease."

    excellent article; should be widely circulated.
     
  9. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Yes, this strikes right to the core of the ideas by the likes of Fink and others who want to pool all the MUS into a single category and think this lack of specificity is somehow useful.
     
    Last edited: May 1, 2018
  10. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Very good article!

    What I find most disturbing about MUS, is that instead of more and more pinpointing to specific diseases, everything gets thrown on a big pile of MUS and given the same treatment. I can't believe that not more doctors and scientist are standing up to this. It seems like going back in time. Off course it's clear that the reason for this MUS thing is money. We don't want to spend to much money on unnecessary care. I totally get that.

    The problem with MUS is that it's a big pile: there is the person with a stomach-ache that he had for two weeks, the hypochondriac who is in the clinic three times a week, the burn-out patient and somewhere on that pile is the severe ME-patient who has been in bed for 30 years with a stomach tube for feeding. I think every logical thinking person can see that you can't draw conclusion if you put all those people in one category, it's actually the most ridiculous thing ever!

    The other weird thing is that you are labeled as having psych problem, without any bit of evidence of psych problems.
    What I don't get is: what would be wrong with the strategy to be really honest? Just say: we don't know yet.

    I can even imagine being more honest:
    Ok, you came with this problem. We made sure you don't have cancer or something acute that needs immediate attention. There is a lot of things we don't know yet. We do know that a lot of things will heal on their own. We are going to wait if it heals on it's own, in the mean time you are free to get help dealing with your problem (CBT/psych/dietician) if you would want to do that (I think a lot of people would, if you offered it in that way!). If it doesn't heal on it's own in (3 months/6months etc) you can come back and we could look for the more rare problems.

    I think MUS consists of 95% short term problems and I think a lot of people will not come back, because their problems dissappeared by that time. What would be against putting some sort of timeline on chronic MUS complaints? For some reason complaints become less problematic to doctors when you say you've had them for a very long time, instead of more problematic. That should really change. The longer you have had a problems, the least likely it is to disappear on it's own.
     
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  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think their logic is that if it were serious the patient would be dead already.

    Of course we could hop back on the roundabout and raise patient suffering and quality of life, but suffering is subjective etc.etc..:rolleyes:
     
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  12. Inara

    Inara Senior Member (Voting Rights)

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    This reminds me of the witch scene in Monty Python. The villagers bring a woman to their lord and call her a witch - she's dressed as witch, so she must be a witch. Although it's obvious the long nose is a false nose (a carrot?) - and the lord verifies this easily - and although the villagers confess they dressed her up, they still find a way of "proving" that she's a witch (namely that she weighs "as much as a duck").
    That mirrors a bit my experiences with psych people: no matter how many objective facts you bring along, it's always psychological - because they say so. MUS, MUPS and the like embody this principle in a very painful way.
     
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  13. alktipping

    alktipping Senior Member (Voting Rights)

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    when the medical industry stops believing in the 50 years of hype in their godlike understanding of all things to do with human biology .then and only then will they find it easy to admit they lack more knowledge than they care to admit .the fact that they consistently get up to 36% of all diagnoses wrong and prefer to bury their heads in the sand when anything really complex turns up should shame them into demanding more and better research . instead of parasitically relying on patient charities to enhance their still limited understanding of human biology . instead of hundreds of years denying help or compassion to patients they could simply say our knowledge has not caught up to your disease.
     
  14. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    This is the thought I have, too. The paper does a really nice job of soberly laying out the semantic and clinical issues regarding MUS. Unfortunately, this whole MUS thing is also a political-economic issue involving insurers and health services; as well as an ideological issue within the sciences as certain psychiatric-types are trying to stake out ground they don't belong in. Because of this scientists and professionals in scientific fields have to actively push back against these actors and keep science... rigorously scientific.
    Which is to say, there needs to be a well-expressed and rousing call to action for reasonable people in medical science to not just focus on their own work but help put out some unfortunate intellectual wildfires. At least, that's how I see it. I think you're right that scientists and doctors ought to be offended.
     
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  15. Sean

    Sean Senior Member (Voting Rights)

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    It's bizarre.

    When I went for the psych component of my assessment to get the pension, the psych asked me if I had any history of mental illness. And I said no.

    He then said, well personal history doesn't really matter anyway, because people can get mental problems without any history too.

    So I said, why bother asking for personal history then?

    *crickets*

    It was at that point it became clear to me that he was fishing for justification for a psych diagnosis.

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

    Worth highlighting from the article:

     
  16. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    There are whole specialties that don't deal with deadly disease, but only esthethic or chronic and disabling.

    I can still remember going to the dermatologist, having very bad eczema just on my hands, I was just amazed with the serious care I got;) At that time I was at my worst, I could hardly walk around the house at that time. It was just surreal that someone was worrying over my hands that much.

    What to think of orthopedics, nothing life treatening about all the new hips and new knees people need.

    I think it has something to do with the lack of specific organ or symptom to look at. There are so many specialties in medicine and no one is looking at the whole picture anymore. People just can't deal with the multitude of symptoms (and then not dying), it makes you look hypochondriac.
     
  17. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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  18. Lidia

    Lidia Senior Member (Voting Rights)

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    I remember taking my cat to the vet...
     
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  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Caveat emptor

    The following statement by Dr O'Leary within this article needs correcting:

    "This controversy has left the World Health Organization
    in a state of uncertainty about the construct that
    should fill the slot for the new edition of the international
    diagnostic coding manual, ICD-11, due out in 2018."


    and

    "With both sets of issues we find ourselves at a crucial
    historical juncture. Future management of MUS will be
    dictated by the construct selected to replace somatoform
    disorders in the new edition of the global diagnostic coding
    manual, ICD-11."



    As documented on my site, across several reports:

    By February 2012, Bodily distress disorder (BDD) had already been added to the ICD-11 draft. At that point the platform was still known as the "Alpha Draft."

    By July 2012, three severity specifiers had been added, plus a definition.

    By 2014, the definition inserted for BDD characterized the proposed construct as being close to DSM-5's SSD.

    As did progress papers, published in 2012 and 2016, by the S3DWG sub working group that has had responsibility for making recommendations for the revision of ICD-10's Somatoform disorders for the core edition [1][2].

    There has never been any other potential construct under consideration by ICD Revision for the core ICD-11 than BDD, since BDD was first added to the Beta draft, in early 2012.


    In July 2017, BDD was added to SNOMED CT by the ICD-11 to SNOMED Mapping Project Team as an exact match for ICD-11's BDD.

    And it is BDD that appears in all the frozen releases. Including the release frozen on April 4 for purposes of Quality Assurance, in preparation for the release of an initial version of ICD-11, this June.

    There is no "state of uncertainty" for the core ICD-11 version.

    Statements like the one I have quoted above serve only to generate confusion. One has to question why Dr O'Leary would seek to present a "state of uncertainty."

    BDD has "filled the slot" since February 2012.


    References:

    1 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063. [PMID: 23244611]

    2 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353. [PMID: 27717252]


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

    "With both sets of issues we find ourselves at a crucial
    historical juncture. Future management of MUS will be
    dictated by the construct selected to replace somatoform
    disorders in the new edition of the global diagnostic coding
    manual, ICD-11.
    Bioethical contributions to that decision-
    making process would greatly improve the quality of
    patient care for generations to come."


    Again, there has been no consideration of any other construct apart from BDD for the core ICD-11 edition and that has been the case since February 2012.

    But, in Dr O'Leary's "briefing document" for Forward-ME (the initial O'Leary document, not the second version that ME Research UK linked to around April 10, after pulling the initial document), she states:

    "The primary care diagnosis of BSS will have far greater power in determining how ME patients are diagnosed and treated than any diagnosis listed in the general ICD."

    A curious lack of consistency for an academic.

    And for the U.S. where O'Leary lives and works, it is the DSM-5, in any case, that dominates psychiatric diagnosis - not ICD.
     
    Last edited: May 2, 2018
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  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Last year, Dr O'Leary had submitted a proposal for the Deletion of BDD from the core ICD-11 edition.

    This year:

    Extracts from the first version of Dr O'Leary's April 3 "briefing paper" for Forward-ME:

    "Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."


    For a commentary on why Bodily Distress Disorder is very problematic and why exclusions are essential, see:

    https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf



    And on the issue of Bodily Stress Syndrome (the construct that the external PCCG work group has been recommending for the ICD-11-PHC (a diagnostic and management manual for just 27 mental disorders, aimed at primary care and low resource settings, which won't be a mandatory WHO publication for Member States, like ICD-10 is and eventually ICD-11 will be):

    "What Can We Do About It?
    It is very important to be clear and focused about the nature of the objection. ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so. This is the goal."



    I have considerable reservations.
     
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