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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. Graham

    Graham Senior Moment

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    A group of us from Phoenix have almost finished an analysis of the PACE trial - one that takes a critical eye over what has been claimed, but in a more easy-to-read manner. We want it to create a big impact. It has high-level backing and is almost ready.

    We have been using the results from a survey amongst members and friends to highlight the problems in the assessment methods they used, and have now got 62 very useful replies. But the PACE trial had 160 in each of the 4 groups, so we would like to bring our total up to at least 100 to give it more weight.

    It would be great if you felt you could take part. The original thread is here, but you don't need to go there. It is much easier than it looks, and don't agonise over your answers - part of the analysis is to do with how difficult it is to answer accurately.

    First of all tell me whether your are mild, moderate or severe, where mild is defined as being able to lead a reasonably normal life, moderate is defined as not being able to work, and being able to do less than 50% of what you could do before you became ill. Severe is defined as being able to do less than 25% of what you could do before you became ill, and being dependent on other people for activities such as cooking and shopping.

    Then score the answers to 11 questions, 0 which means better than when I was healthy, 1 which means similar to when I was healthy, 2 which means more of a problem than when I was healthy and 3 - much more of a problem.

    Chalder Fatigue Scale

    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?


    Please send me three lots of scores - one for this week, one for a bad patch lasting a week or more over the last year, and one for a good patch.

    My Score:
    Graham - moderate - today 2,2,2,3,1,1,1,2,2,2,3 bad 3,3,3,3,2,1,1,2,3,2,3 good 2,2,2,3,1,1,1,2,2,2,3 (yes, I'm on a good patch at the moment).


    Some people have copied and pasted the questions and put their score beside them - whatever works for you! Make it easy on yourself.

    You can post your scores here, send them to me in a private message, or email them to me - graham.mcphee@gmail.com

    If you find this confusing, send me an email, and I will send you a form to fill in, which is easier.

    Thanks in anticipation.

    Graham
  2. Esther12

    Esther12 Senior Member

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    You've already got my results, but good luck with getting a few more.
  3. sandralee

    sandralee

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    Pleas help. It doesnt take very long.

    I dont like some of the questions, as they dont reflect my illness. Nevertheless the PACE trial data is out there, so we might as well do our best to support Graham and the team to help point out the flaws with the trial.

    All the best,

    Sandra
  4. Graham

    Graham Senior Moment

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    To be honest Sandra, I don't like any of it much, and the scoring needs to go down to 5 for some of the people with ME! But that is coming through loud and clear from the results so far. Thanks for your support.
  5. Enid

    Enid Senior Member

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    Fingers crossed for your 100 + Graham after all your hard work. (I'm already in).
  6. svetoslav80

    svetoslav80 Senior Member

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    Bulgaria
    Svetoslav - mild
    3,3,3,2,3,2,3,3,3,1,3 - this week
    3,3,3,3,3,2,3,3,3,1,3 - bad
    3,3,3,2,3,2,3,3,3,1,3 - good

    Take into consideration that my CF is somehow different from CFS because I never get PEM. I'm generally the same all the time unless I do some stupidity like overeat or drink alcohol. So it's up to you if you take my results for the study.
  7. Graham

    Graham Senior Moment

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    Thanks Svetoslav. We don't have many "mild" ones, and they seem to have the most difficulty with the questions, which is pretty important.

    You are number 68 on the list.
  8. jace

    jace Off the fence

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    Moderate.
    This week 2,3,1,2,2,2,2,2,1,1,2
    Bad patch 2,3,2,3,3,2,3,2,2,2,3
    Good patch 2,2,1,2,1,2,2,1,1,1,2
  9. Wonko

    Wonko Senior Member

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    England
    moderate
    today 2,2,1,2,3,3,3,2,2,2,2
    good 2,2,1,2,2,0,0,2,2,1,2
    bad 3,3,2,3,3,3,3,3,3,3,3
  10. Graham

    Graham Senior Moment

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    Thanks jace and wonko, numbers 69 and 70 respectively. We're getting there!

    Hope you both hit good patches soon.

    Wonko, I have found a very few who have scored zero on some of the questions - better than when they were healthy. I know this is the sort of thing that raises questions, so those others have explained it to me (in one case, for example, she actually sleeps less in a good patch than she did when she was healthy). If possible, could you do the same? You can send it as a private message if you prefer. We are trying to make sure our project is watertight, so I am anticipating all the awkward questions possible.

    Thanks again.
  11. justy

    justy Senior Member

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    Moderate

    This week 3,3,2,3,1,2,3,1,2,3,2.
    Good patch 2,2,1,3,1,2,2,1,2,2,2.
    Bad patch 3,3,2,3,2,3,3,2,3,3,3.

    Hope this helps out.
    Justy.
  12. John Mac

    John Mac

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    Moderate
    This week 2,2,1,2,2,3,3,2,1,1,1
    Bad patch 3,2,2,3,2,3,3,2,1,1,2
    Good patch 2,1,1,2,2,2,2,1,1,1,1
  13. Graham

    Graham Senior Moment

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    Thanks Justy and John - numbers 71 and 72 respectively!

    For a first post, John, that's a very useful one! (I'm a Graham John Mc)
  14. Dorothy

    Dorothy

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    Moderate (but right on the borderline of severe). I wish there was a category for "moderately severe" or "severely moderate".


    This week: 3,3,1,3,3,3,3,3,2,2,3
    Good patch: 3,3,1,3,2,3,3,2,2,2,2
    Bad patch: 3,3,3,3,3,3,3,3,3,3,3


    I want to clarify that the "drowsy" category for me is not an "I need to take a nap" feeling but rather an "I've been hit in the head and/or partied all last night" feeling that requires immediately lying down (but usually doesn't lead to sleep, unfortunately).

    I hope this will help - thanks for gathering all this information.
  15. Graham

    Graham Senior Moment

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    Thanks Dorothy - number 73. It's pretty obvious the scale wasn't devised by someone who has ME, isn't it? I just hope we can do you all justice, but the members of the project who have seen the early drafts think it is going to be powerful.
  16. Dainty

    Dainty Senior Member

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    Hey everyone,

    Just a quick note here, for those with difficulty keeping the numbers straight I found having Graham email the form to me was a whole lot easier. I simply placed an "x" in the correct answer boxes, and it took me just a little over 5 minutes.
  17. Graham

    Graham Senior Moment

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    Thanks Dainty - you are number 78 on the list. We're getting there!

    I did as you suggested and put the reference to the form in bold. Much better! I should have realised that baldness catches the eye.
  18. Valentijn

    Valentijn Activity Level: 3

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    It definitely makes for a very distinguished look, even with a lime green background :)
    WillowJ likes this.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Graham, sent you my answers by email. good luck!
  20. Eucalypta

    Eucalypta Guest

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    lala-land
    Eucalypta - Severe

    This week: 3, 3, 2, 3, 3, 3, 3, 2, 3, 3, 3
    Bad patch: 3, 1, 1, 3, 3, 3, 3, 3, 3, 3, 3
    Good patch: 2, 1, 1, 3, 3, 3, 3, 1, 3, 3, 2

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