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Picariello 2015 The Most Popular Terms for Medically Unexplained Symptoms: The Views of CFS Patients

Discussion in 'PsychoSocial ME/CFS Research' started by Dolphin, Nov 2, 2017.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The Most Popular Terms for Medically Unexplained Symptoms: The Views of CFS Patients

    Federica Picariello, Sheila Ali, Rona Moss-Morris, Trudie Chalder
    February 28, 2015
    Journal of Psychosomatic Research
    http://dx.doi.org/10.1016/j.jpsychores.2015.02.013

    Highlights
    • We assess the top preferences of CFS patients for an alternative umbrella term to MUS.
    • The most popular choices across the rankings were: Persistent Physical Symptoms and Complex Physical Symptoms.
    • According to CFS patients, a term has to reflect the physical experience of MUS.
    • Nomenclature is vital to appropriately reflect conditions and to avoid misshaping opinions of HCPs and the public

    Abstract
    Objective

    Medically unexplained symptoms are common, highly distressing and are often associated with profound disability.

    One of the controversies surrounding this area relates to which umbrella term should be used to group such symptoms.

    The purpose of this research was to establish the preferences of patients with chronic fatigue syndrome (CFS) for an umbrella term for medically unexplained symptoms.

    Methods

    A cross-sectional mixed methods survey design was used.

    Participants were asked to indicate their three most preferred terms out of a list of commonly used terms and to provide any extra comments.

    Frequency analysis was employed to look at the preferences of terms for each rank.

    Comments were analysed using principles of inductive thematic analysis.

    Results

    Eighty-seven patients with CFS completed a self-report survey.

    The term “Persistent Physical Symptoms” was the most popular first choice term chosen by 20.7% of patients.

    Terms containing the word “physical” were consistently more likely to be chosen.

    Three main themes emerged from the thematic analysis:
    1) Physical nature of the illness,
    2) Stigma,
    and
    3) Evaluation of the terms,
    giving a more in-depth understanding of the findings.

    Conclusion
    According to CFS patients, an umbrella term has to reflect the physical experience of MUS.
     
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    For a Moss-Morris and Chalder paper, I thought this was reasonably reported and less annoying than a lot of their output. I'm not saying there were no annoying bits.
     
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    [..]

    [..]

     
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Not sure about last point.
     
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Not sure about last point: it might help.
     
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  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    no there is not a need for spending money on further research into this - some good points made by participants but this sort of issue could be addressed by working closely with patient organisations and doing a focus group or two and a report. Science funding needs to go on biomedical research not on what to call things to make them more acceptable for patients to swallow. Medically unexplained symptoms is a good description if something has not yet been explained. ME isn't fully explained but that doesn't make it medically unexplained so it isn't appropriate to call it that otherwise surely MS and Alzheimers would also fall into the unexplained umbrella.
     
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  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    I'd forgotten that they made that point.

    Since its release, there's been an attempt to present this paper as evidence that patients with CFS do support the use of the umbrella term 'Persistent Physical Symptoms'. I remember thinking when I read it that this study seemed designed to try to claim patient support for such a thing. It would have been pretty easy for them, in this study, to ask if patients wanted to be lumped in with all of these other 'MUS' patients and given on umbrella term, but they did not. Surely that's a better starting point than conducting a study on the assumption that such a term with patient support is needed, and then giving them a limited range of choices on what that term should be.
     
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    See also:
    https://www.s4me.info/index.php?thr...oms-the-views-of-cfs-patients.634/#post-10605
     
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  17. Esther12

    Esther12 Senior Member (Voting Rights)

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  18. Samuel

    Samuel Established Member (Voting Rights)

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  19. Obermann

    Obermann Established Member

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    The most important point to make about the term “medically unexplained symptoms” (MUS) is that it names a social and clinical predicament, not a specific disorder (Kirmayer et al, Can J Psychiatry, 2004). A clinical entity with unknown pathology is typically defined by a set of symtoms and a number of exclusions. The value of such a case definition lies in its practical utility in distinguishing groups of people whose illnesses share the same causes or determinants of outcome, including response to treatment (Coggon et al, Int J Epidemiol, 2005).

    The Wessely school has been trying to represent MUS as a clinical entity, but there is no good reason to believe that patients share causes or determinants of outcome simply because the pathology is unknown. There is actually no way to falsify a statement like "all MUS are purely psychological in nature", because as soon as our knowledge advances and pathophysiological processes are identified for a subset of patients in the MUS group, these patients by definition no longer have MUS. The entire concept of MUS as a clinical entity is nonsensical.
     
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  20. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    As a lot of these snippets enraged me I have one simple suggestion to improve the paper considerably.

    Find every instance of 'felt' and replace with 'experienced' or similar synonym.
     
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