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The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis

Discussion in 'Latest ME/CFS Research' started by Kyla, Jul 10, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Canada
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

     
  2. Bob

    Bob

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    England (south coast)
    Last edited: Jul 11, 2015
    Dolphin, ahmo, Mary and 1 other person like this.
  3. Sean

    Sean Senior Member

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    Interesting.
     
    ahmo likes this.
  4. adreno

    adreno PR activist

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    [​IMG]

    Says it all.
     
  5. jimells

    jimells Senior Member

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    This is a graphic worth printing and saving. Recently I told the neuro that I'd rather have cancer. He was shocked, even after I explained that at least with cancer, in two years I'd likely be dead or cured, instead of living for endless years, feeling more dead than alive.
     
  6. Aurator

    Aurator Senior Member

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    Naturally.
    I remember a meeting I had with a rheumatologist, who, after listening to me explain to him how immense an impact this illness was having on every aspect of my life, looked me in the eye and said he was pleased to tell me I wasn't suffering from any kind of serious illness. We parted on good terms, but probably only because I didn't ask (it would have been futile) "so where do we go from here?"
     
    jimells, Sean, AndyPandy and 4 others like this.
  7. SDSue

    SDSue Southeast

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    Just yesterday, after discussing my recent stint of being (again) totally bed bound and telling me that I need a wheelchair, a walker, a handicap parking pass, in-home care, better treatment of my POTS because it is a "downward spiral without a known cure", better vertigo meds, referrals to endocrine, cardio, nephro, and immunology, my primary said to me the following:

    “At least you don’t have something serious like cancer”. :bang-head::bang-head::bang-head::bang-head::bang-head:

    I’ve said it before and I’ll say it again. You cannot comprehend the devastation of ME/CFS unless you have it (or care for someone who is on the severe end of the spectrum)

    I sure hope the tide is turning. I’m tired of fighting for recognition, respect, and adequate care.
     
    Sidereal, catly, jimells and 14 others like this.
  8. Effi

    Effi Senior Member

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    I never say this out loud, but I do think it often. The fact that this is how we feel should say enough to the person we say it to, but sadly it doesn't. I have no idea how to explain the impact of this disease so that people would understand.
    Amen, Sue. I am just so sick of this total neglect.
     
    jimells, Blue, SDSue and 3 others like this.
  9. Mary

    Mary Senior Member

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    One of my sisters said something very similar recently. I have 9 siblings (!) and amazingly we are all still alive and relatively healthy, except for me, but my sister said pretty much what your doctor said, that none of us are seriously ill, though she knows my life has basically stopped for the last 17 years ..... I didn't bother telling her otherwise - takes too much energy!
     
    Sidereal, catly, SDSue and 3 others like this.
  10. Aurator

    Aurator Senior Member

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    A friend of mine with whom I am in regular contact developed Hodgkin's lymphoma seven years ago. The illness was really quite advanced and he had to have two courses of chemotherapy. He was significantly unwell and debilitated for about six months and less seriously unwell for about another six. But he has been in the clear now for six years and goes running and weight-training every day with no ill effects. He is able to enjoy life to the full and though in his sixties is planning on getting married again soon. He is one of the few people who can sympathize with my condition, and is quick to acknowledge how fortunate he was (relative to me) that he was able to get effective treatment and get it quickly.
     

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