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MUS services in UK and other MUS related issues

Discussion in 'General ME/CFS news' started by Sly Saint, Feb 24, 2019.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
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    Location:
    London, UK
    Multi-drivel at its finest.

    A joined up multidisciplinary service consisting of a pyschiatrist and a nurse and even they aren't joined up. Now we have biopsychsocial-SYSTEMIC (why please?). Usual upside down Descartes. Lots of meaningless Venn diagrams.
     
  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,318
    But seemingly lots of funding and a growing " evidence base" of published papers from a self reinforcing group.
    Never mind the quality feel the width.
     
  3. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,252
    I'm speechless.

    That's just one item in a long list of vague factors. Nobody can escape the MUS diagnosis.
     
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,252
    Also this document is a pretty good example of how the same people who like to talk about transcending mind-body dualism are in reality constantly making the distinction between medical and non-medical, organic and not organic. Their whole job depends on this separation, in fact.

    Anyway, this talk about mind-body dualism is just a trick to deflect attention away from the critical question about the evidence behind their claims of psychogenic illness.
     
    ladycatlover, Pechius, Inara and 3 others like this.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
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    Location:
    London, UK
    There used to be a saying that there were three statements that had something in common. I can only remember two:

    The cheque is in the post.

    That was my wife.

    I think the third could be replaced with:

    The treatment is evidence-based.


    Never in my entire career did I find the need to use this phrase.
     
  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    3,338
  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,318
    ladycatlover, rvallee and Trish like this.
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,454
    Location:
    London, UK
    ScottTriGuy, Pechius, Oni and 8 others like this.
  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    3,338
    Rutter's Child and Adolescent Psychiatry Sixth Edition
    edited by Anita Thapar, Daniel S. Pine, James F. Leckman, Stephen Scott, Margaret J. Snowling, Eric A. Taylor

    (from which the graphic in Slide #67 is reproduced)

    Chapter 72: Somatoform and related disorders

    Table 72.1:

    https://books.google.co.uk/books?redir_esc=y&id=KB3yCQAAQBAJ&q=Figure+72.1#v=snippet&q=Table 72.1&f=false


    Figure 72.1:

    https://books.google.co.uk/books?redir_esc=y&id=KB3yCQAAQBAJ&q=Figure+72.1#v=snippet&q=Figure 72.1&f=false


    Table of Contents


    https://books.google.co.uk/books?redir_esc=y&id=KB3yCQAAQBAJ&q=Figure+72.1#v=onepage&q=Table of Contents&f=false


    Only one of the pages of text on Chronic fatigue syndrome are viewable:

    https://books.google.co.uk/books?redir_esc=y&id=KB3yCQAAQBAJ&q=Figure+72.1#v=snippet&q=Chronic fatigue syndrome&f=false
     
    Last edited: Mar 29, 2019
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  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The co-author of Chapter 72: Somatoform and related disorders (with Garralda) is Charlotte Ulrikka Rask MD, PhD, Consultant, Senior Researcher, Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Aarhus, Denmark.
     
    MEMarge, rvallee and Trish like this.
  11. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    What is amazing is that they assert that various illnesses are psychogenic but cannot provide anything resembling evidence. It's a commonly accepted belief that is never questioned. By now there is a complex belief system built on top of it. Unsurprisingly they struggle to produce convincing research showing the treatments help - that is exactly what you'd see if they were working with wrong assumptions.

    That's probably also why just about every BPS oriented ME/CFS study has some big flaw that invalidates it. A flawless study would show that the approach and assumptions are incorrect.
     
  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,338
    The beginning of Chapter 72: Somatoform and related disorders is available to view in the 2017 edition (which includes reference to DSM-5 and to the forthcoming ICD-11, which is going forward with a DSM-5 SSD-like disorder construct):

    https://books.google.co.uk/books?id=mFLKCQAAQBAJ&q=Chronic+fatigue+syndrome#v=snippet&q=Chronic fatigue syndrome&f=false

    Pages 1036, 1037, 1039, 1040, 1043, 1046, 1049 (which includes "Treatment of chronic fatigue syndrome") and 1051 are available from this 2017 edition.
     
    Last edited: Mar 29, 2019
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  13. JemPD

    JemPD Senior Member (Voting Rights)

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    Woah! :emoji_astonished: So they have pervasive refusal on a spectrum with CFS/Fibro?

    Now we see where Crawley's replacement diagnoses of PRS when kids dont improve with CBT & instead deteriorate, comes from.

    :eek:

    ETA: I should make it clear that i don't have any personal evidence that this is what Crawley does, but i have heard (I'm afraid i can't recall where, i think it may have been back on PR) that it happens, & if she believes that CFS is on a continuum that culminates in PRS then i guess it would seem to her, or indeed any of them that a child who gets worse after cbt/get is simply shifting further along that continuum. - Which ought to make them ponder why the treatments supposed to help the somatoform/functional symptoms, actually make them worse.... but of course its much easier to blame the mother so...
     
    Last edited: Mar 30, 2019
  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,338

    If you click on this link:

    https://books.google.co.uk/books?redir_esc=y&id=KB3yCQAAQBAJ&q=Figure+72.1#v=snippet&q=Table 72.1&f=false

    then open blue link

    Page 1035 >


    the text that accompanies Table 72.1 and Figure 72.1 (the spectrum graphic) is on pages 1036 and 1037 (page 1038 is omitted).
     
    MEMarge and Trish like this.
  15. JemPD

    JemPD Senior Member (Voting Rights)

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    yikes.
    they like to point out that Childhood illness has 'clear advantages'.... really? ever been ill as a child? Although i guess for some kids it might garner increased parental attention... it never did for me. I never had anything chronic but a couple of relatively serious incidents were very much played down & ignored, & lol in my house the question as regards whether one was well enough for school was simply - are you dead? No? then you're well enough!

    It's like when they talk about 'secondary gains' in adult ME/CFS.... well there may be seeming gains, but they are far outweighed by the losses - I mean yes one needs benefits to survive, but i was personally earning 5 times what i get in benefits in a job that i loved. I would suggest that while it is clear when a child is 'blagging' - moaning of pain until they are allowed to stay home from school - at which time they suddenly recover & start running around, any half intelligent parent is wise to this. And the seeming gains of 'parental attention' is far outweighed by isolation from one's friends & enjoyable activities, missing one's own birthday party & a host of other things you are looking forward to.
    It's really obvious to discern between 'swinging the lead', either consciously or otherwise - do the symptoms only come when it's 'convenient' or are there also tears of bitter disappointment when they have to miss out on things they love.
     
    rainy, ladycatlover, Skycloud and 6 others like this.
  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    3,338

    From the Dr Rory Conn slide presentation:

    http://medicine.exeter.ac.uk/media/universityofexeter/medicalschool/research/healthservicesresearch/docs/liaisonpsychiatry/Rory_Conn_-_Child_Liaison_2018.pdff


    Slides #73 and #74


    [​IMG]



    (Not clear to me from the presentation where Box 1 is taken from or to whose "key presenting features and diagnostic criteria" reference "13" refers.)
     
    Last edited: Mar 30, 2019
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  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    May have come from these papers:

    https://www.cambridge.org/core/jour.../FCDEE87ED1151AF46E82E01C7667D581/core-reader

    Extract:

    Box 1 Diagnostic criteria for pervasive refusal syndrome (Thompson & Nunn, 1997)

    1. • Clear food refusal and weight loss

    2. • Social withdrawal and school refusal

    3. • Partial or complete refusal in two or more of the following domains: mobilisation, speaking, attention to self-care

    4. • Active and angry resistance to help or encouragement

    5. • No organic condition to account for the severity or degree of symptoms

    6. • No other psychiatric illness that could better account for the symptoms
    -------------------------------------------------------------

    Thompson, S. & Nunn, K. (1997) The pervasive refusal syndrome: The Royal Alexandra Hospital for Children experience. Clinical Child Psychology and Psychiatry, 2, 145–165

    Abstract:

    https://journals.sagepub.com/doi/10.1177/1359104597021010
     
    Last edited: Mar 30, 2019
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  18. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    MEMarge likes this.
  19. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,252
    As would be the case when the therapists have got it totally wrong and are pushing harmful treatment and ideas on the patient.
     
  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Remember the "Muppets" debacle?

    https://www.swpc.org.uk/meetings_old.htm

    South West Paediatric Club
    An organisation of paediatricians and others working in child care in the South West of England.

    Spring Meeting, Thursday 18th May 2017

    RILD lecture theatre, Royal Devon and Exeter NHS Foundation Trust

    Study day on Medically Unexplained Symptoms.

    Thursday May 18th, 09.30-16.30 at the RILD lecture theatre, Royal Devon and Exeter NHS Foundation Trust

    We will be covering topics such as Chronic pain, Chronic fatigue, Ehlers Danlos and POTS, with speakers including Dr Hannah Connell, Clinical lead and psychologist for Bath paediatric chronic pain service, and Dr Rory Conn, Liaison Psychiatrist from London. Our open forum discussion sessions will highlight pilot schemes in the area and will allow for case discussions brought in by clinicians and allied health professionals form around the region.

     

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