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The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Jan 3, 2010.

  1. Martlet

    Martlet Senior Member

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    Near St Louis, MO
    Just before one of my girls got married, I had to fly back to England ahead of my husband and stay with friends, just so I would have recovered enough to not attend the wedding flat on my back, so one friend who came to stay with us here accompanied me back, then handed me over to the friends I was staying with. They were great, but they didn't have an ME-friendly house. Too many chemicals and I was nosediving, so other friends, where the wife has ME, took me in for a week. Of course it helped hugely to be in their home. Since then, I've often wondered about the possibility of opening an ME-friendly B&B if we ever get back to Germany. And with that in mind, I promise you, Mithriel, that if we do sell our home over here and get back over there, I will issue you an invitation so your BH can bring you across to Europe. And I won't charge you!!!
  2. Mithriel

    Mithriel Senior Member

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    Scotland
    A very kind offer, thank you :thumbsup: :Retro smile:

    Maybe when they can treat XMRV and we are all well, we can meet up and party all night :victory:

    Mithriel
  3. Terri

    Terri Guest

    Hi Teej, this is such a sad statement but I totally get how you feel. Most of the time I feel like I have already crawled off into my hole (80% housebound) and am just waiting to die and I have given up "bothering" anybody because it doesn't get me anywhere. And while articles like these are informative, as I stated earlier, the very fact that no one will hear also makes me feel more despondant than ever.

    SD: Obviously, the way other people behave is one of MY main triggers. Please, Please, Please - No sympathy but maybe a little compassion and understanding!
  4. jace

    jace Off the fence

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    England
    Green shoots of springtime?

    Funny, I often think of the way of the Innuit old people, when they were too weak to chew and soften hides. But then I remember what a difference a day can make. There are many hopeful shoots out there, I'm thinking it may be an ME spring. On the other hand if I'm still like this in ten years, and things are still the same, I might not be so optimistic..
  5. Dolphin

    Dolphin Senior Member

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    Well done to (Dr) Angela Kennedy for this. It was the one annoying thing that stood out.

    I just finished reading it. It is good in one way but also also possibly a bit "dense" and one might need also to refer to some of the original papers to flesh out some of the points. Perhaps it would seem less dense if I read it another time.

    If you are short of time, go straight to the results section - the start is about the methods and most people don't need to know about that.
  6. Dolphin

    Dolphin Senior Member

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    I just finished reading it and am a little tired. I am interested in outcome measures in trials. What do people think this paper suggests about outcome measures for trials?
  7. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Welcome jace.

    I like what you said.

    There are many hopeful shoots out there, I'm thinking it may be an ME spring.

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