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I'm going to a MUPS focus group

Discussion in 'Advocacy Projects' started by ScottTriGuy, Aug 21, 2017.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks for all the great feedback while I was sleeping. It makes me feel like I was being productive while snoozing.

    As much as I'd like to audio/visual record the session, I am assuming I will be asked to sign a confidentiality form to protect the personal info of the other patient participants.

    @Jonathan Edwards - the Medical Psychiatric Alliance is well funded so may be quite sustainable: https://www.medpsychalliance.ca/about

    "Established in January 2014 through a $60 million grant, the MPA has a six-year mandate."

    I'm hearing that rather than being a vocal and challenging advocate during the focus group, that it would be more productive to evoke from (interview) them about their MUPS construct, drawing out the nuances to gain a better understanding, not to challenge them. And then publicize / denounce that info via social media.
     
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    And I'm only interested in what the MPA facilitators are saying, not the other patient participants, so their info will never be publicized, only the MPAers.
     
  3. Valentijn

    Valentijn Senior Member

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    You can still record it for your own use, at the very least. But yes, releasing actual recordings of other patients there wouldn't be a good idea. However quoting the people running the show might be useful.
     
  4. alex3619

    alex3619 Senior Member

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    Plus use it politically to expose the stupidity at all levels, including government. If I ever wind up in this situation I hope to tape everything, and not let on till much later that I was planning to expose them.
     
  5. alex3619

    alex3619 Senior Member

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    Witholding the information you have recorded everything during early advocacy is useful. When they deny everything, which is a standard response, you can selectively publish parts of the recordings, then very publicly ask why they lied.
     
  6. alex3619

    alex3619 Senior Member

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    I wonder what the legal status is of signing a confidentiality document with a fake name, and hoping they do not notice? This could be subtle, or blatant ... Micky Mouse comes to mind. Blatant would most likely be noticed though. With any luck there will be no confidentiality clause.
     
  7. lilpink

    lilpink Senior Member

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  8. Valentijn

    Valentijn Senior Member

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    Oh dear. I do hope those GPs get treated for their psychosomatic reaction to patients! :rofl:
     
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    @ScottTriGuy

    Good luck at the group. I hope your in form enough to hold it together for the duration. And thanks for finding this and being willing to be our mole.

    Everyone already brought out many good points. As I read my thoughts were also that it would be good to listen rather than argue and find out there position. Also getting some intel on there structure, names of players, what there stake is etc.

    If you do find an appropriate moment to question their assumptions there is an article written by a Dr who's cancer was not diagnosed because she had a previous MUPS diagnosis.

    http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    Go easy on the biscuits in the tea break - you don't want to blow your cover.
     
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  12. Woolie

    Woolie Senior Member

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    If you're interested in the dangers of MUS being used to deny care, there's this:

    http://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf

    Go to page 48. There's a table that shows how many years, on average, diagnosis is delayed for a rare disease if it is initially misdiagnosed as psychological/psychiatric. The delay is much longer than if the initial misdiagnosis is a non-psyc one. The difference in some diseases is up to FIVE years.

    The problem is a lot of things. Doctors failing to take patients complaints seriously after they've been assigned a psyc diagnosis. But my personal view is that the biggest problem is the non-falisifiability of a psychological diagnosis. So it sticks. Whereas a wrong medical diagnosis can be overturned when facts start to be inconsistent with the disease.

    Its based on the European scene, but its still very persuasive evidence for the dangers of psychological loose thinking.

    The diseases studied here are called rare diseases, but they're not all that rare, really. Things like Ehler Danlos syndrome, Cystic fibrosis.
     
    Last edited: Aug 22, 2017
  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks much @Woolie - that's a great reference.

    I especially like the part that says it the "patients themselves are often the crucial factor in obtaining a correct diagnosis"
     
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  14. Kati

    Kati Patient in training

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  15. Snow Leopard

    Snow Leopard Hibernating

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    www dot medpsychalliance dot ca
    @MedPsychNews
    www dot medpsychalliance dot ca/documents/1234509/1235666/2015-2016-MPA-related-scholarly-publications.pdf/
    etc.

    I agree with the others, you are going to gain nothing at all (except for maybe a bad mood) by questioning them directly. Better to play along, but simply keep asking "what is the evidence". Politely point out any double standards or contradictions in quality between the evidence they present and the evidence required for other diseases. When they give you some vague unconvincing explanation, say that you find it vague and unconvincing. Also you may wish to tell tell them that treating "MUS" entirely with psychological treatments contradicts the idea that they should be treating both the mind and the body. Focusing just on the mind in practise, perpetuates mind-body dualism in practise. Unless they measure objective outcomes, rather than just self-report outcomes, they are perpetuating mind-body dualism. If they say no, we're not perpetuating mind-body dualism, you can say that this is ultimately the way it appears to the patient.
     
    Last edited: Aug 22, 2017
  16. Jan

    Jan Senior Member

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