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Langelaan, '07: CFS patients worse on every dimension of EQ-5D than visual impairment

Discussion in 'Latest ME/CFS Research' started by Dolphin, Oct 21, 2011.

  1. Dolphin

    Dolphin Senior Member

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    Just came across this. Thought it was interesting. Doesn't seem to be referred to much.

    Although it shouldn't be a competition, these sorts of points are important in terms of research money, how much should health systems pay for treatments, etc.


     
  2. sandralee

    sandralee

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    Sydney, Australia
    Hi Dolphin,

    I find your post personally particularly interesting.

    I am totally blind, and prior to the onset of ME, I attained a university degree, held down a well paid job, had a busy social life, travelled overseas several time, got married and had a daughter. In fact, I would have described my life as happy and fulfilling.

    It would be untruthful to give the impression that life was easy and without difficulties, but by directing lots of energy to employing adaptive strategies, life was pretty good.

    Now enter ME/CFS, and the main thing that I needed to function as a blind person in a sighted world was energy.

    Many in the community confuse disability with illness, and in many disabilities, but certainly not all, adaptive techniques can be employed to help ameliorate the impact of the disability. With illness, and in particular ME/CFS, this is far more difficult if not impossible.

    I am constantly amazed when asked if I ever think Ill be cured in my lifetime. Of course people are referring to my blindness, and I have to explain that my illness is far more disabling than my blindness ever was. Regretfully, I dont think my statement actually has an impact with many people because of preconceived ideas.

    The one thing that really ticks me off is that when people who only met me after contracting ME/CFS, often attribute my current low level of functioning to my blindness.

    All the best,

    Sandra
     
  3. Dolphin

    Dolphin Senior Member

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    I'm very sorry that you have both disabilities. Like you say, not all adaptive techniques make work well when one has both problems. I thought about it a little recently: there was a man here who became blind suddenly as a student. He then went on all sorts of adventure challenges, was about to get married, etc and should he could re-build a life. Then, he fell out of a first floor balconey when away (although it wasn't said, I think drink may have been involved - he was at a rowing contest). Everyone had a lot of sympathy for what happened.

    Anyway, just to clarify that I have nothing "against" blindness - I have thought before that my life is more difficult than if I simply was permanently in a wheelchair but had power in my upper body (I'm severely affected - housebound for 17 years) but not compared myself blindness. But that's what the result showed, so I focused on the blindness aspect (I don't currently have the full paper).

    Related to this, I was talking to somebody recently who pointed out that when they assessed spinal injuries and the quality of life associated with it when assessing QALYs (for calculations to do with quality of life, cost of treatments), they found that there was quite a big gap in how people who had the injury rated quality of life compared to other people, with people who hadn't had the injury saying that effect would be a lot worse. This person said what "authorities" did was average the two scores/assessments. Anyway, just thought I'd throw it in, for what it's worth.

    Best of luck with your own continuing battle.
     
  4. sandralee

    sandralee

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    Sydney, Australia
    Hi Dolphin,

    I certainly didnt interpret your post as if you had anything against blindness in any way. In fact, I completely agree with the point illustrated by your post.

    All the best,

    Sandra.
     
  5. Dolphin

    Dolphin Senior Member

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    Thanks Sandra.
     
  6. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
    I hadn't seen this one, actually I'm interested other studies using the EQ-5D right now as it has been operationalised by a dutch group to measure disability weightings for a certain metric.
     

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