The 12th Invest in ME Conference, Part 1
Over the Hills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

'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.
     
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  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?
     
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  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 Homo neanderthalensis

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

     
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  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.
     
  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!
     
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  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.
     
  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.
     
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  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.
     
  15. Dolphin

    Dolphin Senior Member

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    I found this interesting enough. Like the authors say, the issue hasn't really been explored much.

    There wasn't very much psychobabble or similar which was good.

    I didn't have too many major complaints about it.

    I disliked the use of the term "illness behaviour" a few times with regards to people resting, meditating, doing less, et cetera. They made it sound like the patients might be choosing for no reason/out of (bad?) habit to do these things. A more neutral term like "illness management" might be better e.g.
    They only give one side of the story really regarding patients going to ME/CFS forums and reporting being recovered. They don't mention that what somebody ascribes to have caused their recovery may not be the reason they improved. They may simply have been lucky, diagnosed early, more mildly affected, et cetera.
    Also all the people saying they are recovered in this paper didn't necessarily sound like they were fully recovered so again that could be worthy of criticism depending on the content of their posts on ME/CFS forums.
     
    Last edited: Mar 4, 2017
  16. Dolphin

    Dolphin Senior Member

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  17. Dolphin

    Dolphin Senior Member

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    If you are at 70%, I'm not sure that should class as recovered.
     
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  18. Dolphin

    Dolphin Senior Member

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    If you are not working or studying full-time, you may not be aware that if you tried to work or study full-time you might have a lot of problems.

    So I tend to be sceptical of people claiming to be fully recovered unless they are working or studying full-time or engaging in a lot of high intensity activity.

    This person doesn't sound like they are working full-time (and may not be working at all) so I'm not convinced they are necessarily recovered:
     
  19. Dolphin

    Dolphin Senior Member

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    The 2nd sentence isn't really explored in the full text. I don't find it very convincing that this study tells us what to do to become well but it might but it might help learn how people who were high functioning can adapt to their state where they don't fit well into the normal ME/CFS community. I think that having one foot in both camps is probably a reasonable way of continuing to exist rather than treating yourself as fully recovered and that ME/CFS is no longer relevant in your life.
     
    Last edited: Mar 4, 2017
  20. Dolphin

    Dolphin Senior Member

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