Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Impact of social support on the relationship between illness invalidation and shame among individual

Discussion in 'Latest ME/CFS Research' started by JaimeS, Sep 5, 2015.

  1. JaimeS

    JaimeS Senior Member

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  2. Denise

    Denise Senior Member

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    Have you read it?
     
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  3. JaimeS

    JaimeS Senior Member

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    Wow, only half?

    ...nearly one of ten of participants weren't diagnosed for 11 or more years after onset.

    Am I wrong, or is this the first time that has been reported? Lovely.

    The more recent the onset, the more acute the shame the participants were feeling. I guess you have time to get used to the fact that your culture does not always acknowledge your illness. Also, the lower the household income, the more the participants felt (were made to feel?) ashamed for their 'choice' of having ME/CFS.

    This I had observed myself, but still find insane: the more terrible and severe the symptoms, the more they are discounted. I remember our conversation here about limiting how many symptoms you state you have and making sure the ones you choose to mention are serious but not so serious that they will be discounted:

    A shocker was, if your doc was male? There was a better chance of less illness invalidation. I wouldn't have guessed that would necessarily be true.

    I feel like we have Freud to blame for that.

    As it should. Thank you, PR, for existing. Thank you, mods, for helping make it happen!
     
    Last edited: Sep 8, 2015
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  4. JaimeS

    JaimeS Senior Member

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    Reading it now, Denise! :)

    -J
     
  5. dancer

    dancer Senior Member

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    I started skimming...I appreciated this quote:

    Anthropologists have noted that Western culture has shifted
    toward new explanatory models of illness that are “blame focused” and that place
    responsibility for disease processes and their outcomes upon the
    patients themselves,
    often ignoring the complexities of disease processes (Finerman & Bennett, 1995, p.1).

    Oh, I see you already posted that one (was writing this while you posted more)
     
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  6. JaimeS

    JaimeS Senior Member

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    I will say that the author's sliding scale of ability and disability is very poorly-done. Rather than have categories with descriptions, it's simply a scale from 0-100. I think it would have been more useful to specify what each level signified, though perhaps she had a rationale for letting people make up their own minds.

    I missed this quote:

    -J
     
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  7. JaimeS

    JaimeS Senior Member

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  8. evatious

    evatious

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    People are [mostly] ableist. Almost all of them. Invisible illness and disability is the last bastion of [acceptable] unacknowledged bigotry... Some of my doctors are among the worst.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    It's a really knee jerk reaction. People generally want to do better and achieve things. The media is constantly saturated with images of health and fitness and how to achieve it and the 'Just do it' attitude. I think it has a part in forming aggressively hostile opinions toward the disabled. Disabled people in fortunate/lucky circumstances get trotted out as if everyone can overcome anything with enough will.

    I haven't read it in detail but it seems very positive.
     
  10. L'engle

    L'engle moogle

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    Thank you to the author of this study!
     
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  11. Snow Leopard

    Snow Leopard Hibernating

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    Last edited: Sep 5, 2015
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  12. JaimeS

    JaimeS Senior Member

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  13. JaimeS

    JaimeS Senior Member

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    I keep finding awesome quotes:

     
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  14. JaimeS

    JaimeS Senior Member

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    :eek::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::aghhh::thumbdown:

    W-what. What. What.

    What. What.

    Early is when you might be able to stem the tide. I think this is going to be quoted in a deposition someday.

    One can only hope.
     
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  15. JaimeS

    JaimeS Senior Member

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    I have wondered about this many times, whether the helplessness doctors feel as the ones who 'should' have the answer informs their attitudes towards those with incurable chronic illness.

    -J
     
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  16. JaimeS

    JaimeS Senior Member

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    I'm sure this doesn't sound familiar to anybody. :(
     
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  17. Valentijn

    Valentijn Senior Member

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    I keep forgetting you're somewhat new to the club. :hug:

    Imagine the most horrible things a doctor or therapist might say about an illness or patients who have it, and odds are the biopsychosocial (pyschosomatic) proponents in the ME/CFS arena have already said something worse.

    I went through Professor Sir Simon Wessely's compiled research at one point to pull out the gems. A lot of it is explaining the theories (okay, horrible enough) but the bits near the beginning under headers for "BIOLOGICAL INVESTIGATION AND TREATMENT" and "DISABILITY PAYMENTS AND CARER ASSISTANCE" are especially egregious.

    I recommend wearing a heart rate monitor before starting through the list of quotes, and taking a break when it gets too elevated :p It's also worth searching the entire page for "national archives", since those are semi-private communications to a government agency which were later released via FOIA request. He really lets loose when he thinks the cray-cray patients won't hear about it :jaw-drop:
     
    Last edited: Sep 6, 2015
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  18. alex3619

    alex3619 Senior Member

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    Never. Except that one time. Oh, and the other twenty. Oh, ok, a lot.
     
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  19. alkt

    alkt Senior Member

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    as in don't blame the medical profession for their lack of knowledge blame yourself for having the symptoms we cannot give you answers for. we will now pass you on to the psychiatrist who are really good at confounding you and us with psychobabble.
     
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  20. evatious

    evatious

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    That's an impressive selection!

    I can't unsee that lot o_O What a massive tool. So much bias...
     
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