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NHS England MUS page updated June 2021

Discussion in 'UK clinics and doctors' started by Sly Saint, Nov 5, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.nhs.uk/conditions/medically-unexplained-symptoms/

    should this page not now say " ME/CFS" and link to the new NICE guideline and specify that if diagnosed with ME/CFS (or ME/CFS is suspected) people should seek advice on ME/CFS 'treatment'.
     
    Sean, Joh, alktipping and 13 others like this.
  2. Trish

    Trish Moderator Staff Member

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    The whole page should be scrapped. If not, ME/CFS should be removed from it, or just a link to the ME/CFS guideline.
     
    Sean, alktipping, DokaGirl and 13 others like this.
  3. JemPD

    JemPD Senior Member (Voting Rights)

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    from the nhs page, my bolding
    That is rather sly. Based on the fact that a dx of somatisation/bodily distress disorder etc is dependant on being (in the Dr's opinion) overly distressed or emotionally affected by your symptoms, it seems rather underhand to make a point of advising people to tell their dr how it makes them feel, when they may not have done otherwise.

    These days i advise anyone visiting a Dr never ever to say a symptom is upsetting them unless they want a mental health dx on top of or instead of anything else. Especially if you're female.

    And as for telling the doc what you think the cause is & what you're expecting.... good grief! dont ever tell em that... thats a lightning fast route to a health anxiety/SSD dx.

    ETA: I'd be very interested to know if the nhs advises anyone with any other condition to discuss their feelings about their symptoms and what they think the cause is? Since belief in an organic cause & being distressed by symptoms are what Drs are told to look out for when making a dx, this advice is leading people to do/say things that will increase their likelihood of getting a functional/conversion/BDD/SSD dx. I think it's sneaky. eewww
     
    bobbler, livinglighter, Ash and 16 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Let me see - how a test might help…..
    ok - so you’re saying a person with suspected ME is supposed to be the expert in what tests to do and how to treat symptoms……….


    Yet symptom focusing = catastrophising
     
    livinglighter, Ash, Sean and 8 others like this.
  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    The very first line of this page, I would argue, is misleading:

    The best we can say is that ‘many people have persistent physical complaints that are not currently identified as symptoms of a medical condition, for some an underlying condition may subsequently be identified, but for others, given the limits of our current medical knowledge no underlying condition will be identified’. However use of ‘medically unexplained symptoms’ sets the patient up for being gaslighted into believing they have the condition ‘Medically Unexplained Symptoms’.

    Personally I would further argue that this page should give information about the problematic aspects of such a diagnosis. Here is my rewrite:

    Used properly “medical unexplained symptoms” is a statement of the current limits of medical knowledge, however for some doctors/psychiatrists it is a quasi psychiatric diagnosis where, without evidence, the person making the diagnosis is asserting a belief that your symptoms arise from whichever psychological cause they happen to prefer, be it stress, personality disorder, conversion disorder, etc.

    It is theoretically possible that for some people with MUS their symptoms may arise from psychological or psychiatric cause(s), but at present there are no independently verified assessments to demonstrate this, and given the advocates of MUS as a psychiatric condition often believe that actually doing medical tests will encourage suffers in false beliefs about a physiological basis for their symptoms, this diagnosis risks you will not receive adequate medical assessment and increases the the chances that a treatable medical condition, such as some heart conditions in women, will be missed.

    Edited for clarity
     
    Last edited: Nov 5, 2021
    Sean, Wits_End, alktipping and 5 others like this.
  6. Solstice

    Solstice Senior Member (Voting Rights)

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    The page should be scrapped yeah. FND and others like it as well.
     
    Sean, JemPD, alktipping and 6 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE
    A GUIDE to assessing and managing patients under the age of 18 who are referred to secondary care"
    https://paedmhassoc.files.wordpress.com/2018/12/mus-guide-with-leaflet-nov-2018.pdf

    some very disturbing practices in this document

    I found the link in the download of this:

    "Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in children – guidance
    This guidance, published in March 2021, provides best practice advice for paediatricians in the medical management of PP and FII cases to obtain better outcomes for children."

    https://childprotection.rcpch.ac.uk/resources/perplexing-presentations-and-fii/

    In it they on the one hand say that PP or FII should not be confused with MUS. Then they provide a definition of MUS:
    which ends in the sentence "Experienced clinicians report that, on occasion, MUS may also include PP or FII."

    https://childprotection.rcpch.ac.uk/resources/perplexing-presentations-and-fii/
     
    Sean, JemPD, alktipping and 2 others like this.
  8. Ash

    Ash Senior Member (Voting Rights)

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    This is for why.
    I know in my hurting bones that we must destroy this evil conception. Lest it chase down and consume the children.
     
    Last edited: Nov 6, 2021
    Alis, Sean, alktipping and 6 others like this.
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Totally agree. IME, doctors don't want to see any negative emotions. Following that NHS guidance to reveal one's feelings could lead to a mental illness diagnosis, and possibly to ignoring further testing, and investigations of one's symptoms as physiological.
     
    Sean, Wits_End, JemPD and 4 others like this.
  10. alktipping

    alktipping Senior Member (Voting Rights)

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    all this to protect doctors ego's .why is it so damned hard for them to say we do not know the hard work/medical research just hasn't been done . i always wonder why the medical profession is so silent when it comes to lobbying for real research into increasing our present understanding of the extremely complex organism that is the human body .
     
    Ash, Alis, chrisb and 4 others like this.
  11. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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  12. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    How insightful:
    And here is me thinking if you know what causes MUS it is not ‘medically unexplained’. Pure conjecture and innuendo, without any real evidence.
     
    alktipping, Ash, chrisb and 2 others like this.
  13. JemPD

    JemPD Senior Member (Voting Rights)

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    because that would be to rub salt in the unface-able wound that is the fact that everything there is to know is not yet known. Its too distressing for them, they cant go into their working day feeling as if they (collectively) dont know everything, it would be too scary.

    with many lives in their hands there has to be a degree of hubris, otherwise how do they trust their own judgement. The uncertainty would be devastating i'd think. Or at least take a very mature & courageous mindset, and many of the Drs i have seen, both personally and witnessed, are really rather childish in their mindset & behaviour. they just cant handle it.


    Its quite sad if it werent so catastrophically bad for their patients who fall into the 'dont yet know' category. Those patients shine a spotlight on their inadequacy - they cant allow that to stand, so....
     
    alktipping, Ash, chrisb and 3 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    given the recent discussions re mus I've had another look at this page.

    it specifies
    so the NICE guidelines for ME/CFS including diagnostic criteria are what? some attempt to explain a 'poorly understood syndrome'? o_O
     
    RedFox and Peter Trewhitt like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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