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Please help with survey in analysis of PACE trial - urgent

Discussion in 'Action Alerts and Advocacy' started by Graham, Oct 1, 2011.

  1. justine

    justine

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    Long Island, NY
    Hi Graham -

    I saw the little flier note and thought I would send my answers...I hope you get all the responses that you need!

    I would fit the "severe" category...

    current: 3, 3, 2, 3, 2,3, 3,3,3,3, 2.....bad: 3,3, 2, 3, 3, 3,3,3,3,3,3....good: 2, 3,2,2,1,2,2,2,2,2,2

    Best of luck-
    Justine
     
  2. Graham

    Graham Senior Moment

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    Sussex, UK
    Thanks Justine - you are number 114.

    Things have really accelerated since that little flier went up. It was Dainty's idea.
     
  3. kurt

    kurt Senior Member

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    USA.Earth
    Kurt - moderate - today 3,2,2,3,2,3,3,2,2,1,2 - bad day 3,3,3,3,3,3,3,3,2,2,3 - good day 2,1,2,1,1,3,2,1,1,1,2 (very rare to have a good day)

    The survey asked nothing about PEM so while entertaining to see how we do, this is not really about ME/CFS...
     
  4. Graham

    Graham Senior Moment

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    Sussex, UK
    Thanks Kurt. You are number 115 on the list. You are right about PEM and it not being that relevant to ME.

    The frequency of responses is slowing down now, but we are over 100 so I have decided to stop at the end of Friday, so that I can start to process and analyse all of the data. If anyone is about to reply, please do so, because the bigger the number, the better.

    Thanks to everyone who has taken part - now it's over to me to do justice to your efforts. I hope I can!
     
  5. springblossom

    springblossom

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    Norfolk, UK
    I hope it is okay to put my answer here.

    I would say I was moderate to severe.

    TODAY
    3, 3, 3, 3, 2, 3, 3, 3, 3, 3, 3
    GOOD
    3, 2, 3, 2, 2, 3, 2, 2, 2, 2, 2
    BAD
    3, 3, 3, 3, 3, 3, 3, 3, 3, 3, 3

    Do you have problems with tiredness?
    Do you need to rest more?
    Do you feel sleepy or drowsy?
    Do you lack energy?
    Do you have trouble starting things?
    Do your muscles have less strength?
    Do you feel weak?
    Do you have difficulty concentrating
    Do you find it more difficult to find the correct word?
    Do you make slips of the tongue when speaking?
    How is your memory?
     
  6. Graham

    Graham Senior Moment

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    Sussex, UK
    Thanks Springblossom - you are number 117 on the list. Much appreciated! What do you think the odds are that we will hit 120 by the end of Friday deadline?

    One of the graphics involves plotting individual scores over a graph then moving them from good to bad spells under an animation. I have only done the first 50 so far!
     
  7. u&iraok

    u&iraok Senior Member

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    U.S.
    moderate

    this week: 3,3,3,3,2,3,3,3,3,3,3
    bad patch: 3,3,3,3,3,3,3,3,3,3,3
    good patch:2,2,2,2,1,2,2,3,3,3,3

    (in other words, no matter how I feel, my brain is fried)
     
  8. Graham

    Graham Senior Moment

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    Sussex, UK
    Thanks u%iraok

    You are number 119! I really hope you hit a better patch soon. I know what you mean about a fried brain. Mine isn't always like that, but it has been for the last few days. I'm struggling to focus on getting the numbers right.
     
  9. little_bird

    little_bird

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    London
    little_bird - moderate (but towards the severe end)
    today 3,3,2,3,3,3,3,2,2,3,3
    bad 3,3,3,3,3,3,3,3,3,3,3
    good 2,2,2,2,1,2,2,2,1,1,3
     
  10. Graham

    Graham Senior Moment

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    Sussex, UK
    Thanks little bird - you are number 120.

    Since my posting this afternoon, my brain has suddenly cleared: looking at your "good" scores, I hope you hit a good patch as well quite soon.
     

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