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'Betwixt and between' Liminality in recovery stories from people with Myalgic Encephalitis

Discussion in 'Latest ME/CFS Research' started by Cheesus, Jan 11, 2017.

  1. Cheesus

    Cheesus Senior Member

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    https://v00dor00001d.dmu.ac.uk/handle/2086/12721

    Chrome gave me a warning that the website might be unsafe when visiting it. I don't think you have anything to worry about, it is just a freaky URL.
     
    Joh likes this.
  2. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    I don't understand what the abstract is talking about and don't feel encouraged by it to try the web link.

    Can anyone clarify where it was published and who by, and what on earth it's talking about?
     
    Kati likes this.
  3. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    Just noticed the web address starts with something remarkable like voodoo...

    :rofl::rofl::rofl:
     
  4. adreno

    adreno Learned helplessness

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    It isn't talking about anything. It's complete nonsense.
     
  5. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    dmu.ac.uk is the De Montfort University, Leicester.

    https://www.dora.dmu.ac.uk/xmlui/handle/2086/12721

     
    Valentijn likes this.
  6. Cheesus

    Cheesus Senior Member

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    It's worth noting also that this PhD was done at the School of Applied Social Sciences. It is not a medical document.
     
    MastBCrazy and trishrhymes like this.
  7. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    Thanks for that. :lol:

    I take it this young woman's thesis comes out of voodoo university.
     
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  8. Joh

    Joh Senior Member

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    Couldn´t open the full document (too lazy to create an account) and it´s not so easy to sense psychoquackery in a foreign language, so I might be way off. :)

    But I think the paper might be actually interesting. Few ME-patients recover fully, the lucky ones, who feel better/go in remission are mostly still stuck in an area in the middle: they are not bed- or housebound anymore and are able to work, but they´re not as healthy as before, can´t do sports etc.

    In comparison to being a cancer survivor, nobody in your new "healthy" life can relate to what you´ve been through. If you tell your new collegues and friends you spent the last 10 years in bed with ME, they think you´re insane. But you might feel too healthy to hang out in ME-forums all the time. I can relate to that you might feel like you don´t fully belong in either of the two worlds and are stuck in the middle (pure fantasy, didnt´t have the luxury, yet).

    In short: I can appreciate that it might be challenging to return to the real world partly recovered after being in ME-hell. But of course I would chose these challenges everyday above my current state of being bedbound. ;)
     
  9. Murph

    Murph

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    Looks interesting to me. It's qualitative epidemiology - a simple and small study of patients who "recover." Saying do they really recover? Where do you end up if you're "mostly" recovered? How do you identify? As sick or well?

    Not going to solve the disease but still interesting and the kind of research any proper disease should have going on. Patient experiences matter!

    It seems to note that the in-between state of being mostly recovered is a bit similar to the in-between state of having a disease that the medical world doesn't fully recognise.

    The word "liminality" is a bad choice though. Death to jargon!
     
    Mel9, Snow Leopard, Joh and 1 other person like this.
  10. Cheshire

    Cheshire Senior Member

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    This abstract is for me the perfect example of an attempt to hide intellectual vacuity behind a big wall of jargon.
     
    TiredSam and trishrhymes like this.
  11. Forbin

    Forbin Senior Member

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    There certainly is one liminal state that ME/CFS has a lot in common with....

    [​IMG]
     
  12. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I read a PhD thesis a few years ago which was similar, although without the emphasis on recovery. The liminality stuff was interesting, quite poetic. We do occupy a strange position in society.
     
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  13. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Also to be fair, this is an academic publication I think they should be allowed some jargon! You wouldn't make that complaint about a biochemistry paper. To me it makes sense and has a place.
     
    Little Bluestem and zzz like this.
  14. Jenny TipsforME

    Jenny TipsforME Senior Member

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    In terms of a personal response I hadn't thought of my experience this way but it does resonate. I got to 95%well but I still thought of myself as having ME (this is a level at which you can probably interpret either way). In that sense I was still looking towards being fully well, so now looking back I wish I'd appreciated the almost-health more.

    What is probably different about me from these participants is I didn't get involved in the ME community in the initial phase. Groups seemed depressing, this forum didn't exist and neither did Twitter. I didn't then have the feeling of not fitting in anymore as I was doing better, but I did have the feeling of not being the same as well people.
     
    Joh likes this.

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