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How to challenge Pervasive Refusal Syndrome

Discussion in 'PsychoSocial ME/CFS Research' started by adambeyoncelowe, Mar 14, 2018.

  1. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    The whole concept of pervasive refusal syndrome scares me. It sounds exactly like severe ME, but where the patients refuse treatment. How can we challenge this diagnosis? It's about time a paper was published to dissect and demolish it, as it's a danger when it comes to people getting sectioned (and in hiding poor outcomes for BPS treatments).

    http://adc.bmj.com/content/99/Suppl_1/A70.2
     
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  2. Lidia

    Lidia Established Member (Voting Rights)

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    From 2014. Those poor children.
     
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  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I tried to ask Bristol press office if it was a historic diagnosis or one Esther made up, but they ignored the question and answered something else instead. I'm convinced it's a weaponised diagnosis. In fact, I'm using that term from now on.
     
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  4. Lidia

    Lidia Established Member (Voting Rights)

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    The food refusal thing is such rubbish. They’re not refusing as a means of holding power or control; they’re refusing because they’re too sick. I agree weaponised diagnosis is an accurate term.
     
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  5. Adrian

    Adrian Administrator

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    It would be interesting to know how common these symptoms are in ME.

    "self-care, social withdrawal and significant reduction in mobility and activity." all seem to follow from being severely ill. And also a bit of choosing where to use limited energy.

    I think some patients struggle with eating. My daughter does (but I am concerned she may be one of these 6 as crawley tried to change to a PRS diagnosis). I would note that nausea is not discussed as a symptom.
     
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  6. Keela Too

    Keela Too Senior Member (Voting Rights)

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    And the only real difference between ME and PRS seems to be the "unrefreshing sleep" descriptor. I don't like that one, as it's so hard to really know what they mean.

    I mean if I miss a nights sleep I'm less well than if I get some sleep, so even if I don't wake up feeling refreshed and well, the sleep has still helped restore some better well-being and could then be described as refreshing???
     
    Last edited: Mar 14, 2018
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  7. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I found this:

    Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762526/

    "Treatment should be multidisciplinary and characterized by patience, gentle encouragement and tender loving care."
     
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  8. Keela Too

    Keela Too Senior Member (Voting Rights)

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  9. Keela Too

    Keela Too Senior Member (Voting Rights)

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  10. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Just reading about this makes me so vexed!
     
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  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    The International pediatric primer has a section on this - it also has confirmation of severe ME in children - perhaps Dr Rowe could be invited to comment
    from primer below
    copy of primer attached as PDF
    upload_2018-3-14_13-32-24.png upload_2018-3-14_13-34-9.png upload_2018-3-14_13-34-52.png
     

    Attached Files:

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  12. Valentijn

    Valentijn Not a moderator

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    Refusing treatment should never be pathologized. It's the explicit right of all patients, as NICE keeps emphasizing while trying to dodge the blame for the medical abuse resulting from its guidelines.
     
  13. Flying Dutchman

    Flying Dutchman Established Member

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    Two observation about the Crawley article in the original post:

    1. She extrapolates conclusions about the features of PRS on the basis of a tiny sample size.

    Her total sample: 7 cases of PRS.

    For some of the features of PRS about which she draws conclusions, she has data for just 3 patients; for some others, just 4 patients.

    2. At least some of her PRS kids appear to be very sick.
    She reports that the medium SF-36 Physical Scale score for this group was literally ZERO!

    (She doesn't disclose how many cases she had this SF-36 data for.
    She discloses a range of scores for PRS cases of 0-50.
    With this range and a medium score of zero, she must have had data for at least 3.
    She might have had data for as many as 6 cases.)
     
  14. Barry

    Barry Senior Member (Voting Rights)

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    [My bold]

    Makes you want to throw up.
     
  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    I' m sure Dr Nigel Speight would have a succinct opinion on this having treated severe paediatric ME.
     
  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    How were the children assessed? What tests were run?
     
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    From the fitbit type monitor my daughter uses it' s clear that there us very little " deep sleep". Perhaps this is a function of " unrefreshing sleep" as it may be during this phase that the restorative processes are undertaken?
    I suspect however that this is a favourite questionnaire item....
     
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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