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Please help evaluate the Chalder Fatigue Scale

Discussion in 'Action Alerts and Advocacy' started by Graham, Aug 4, 2011.

  1. slayadragon

    slayadragon Senior Member

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    Where is the reference for the "protocol paper for the PACE trial" that lists the Chalder fatigue scale?

    I'm only interested in the scale they used in that paper, with their exact wording. I'm perplexed that I haven't been able to find it.

    The numbers that I gave you were for a "Bad Spell" and for "Usual/Good Spell." The usual _is_ a good spell, because I'm able to exercise control over my symptoms through mold avoidance. The exceptions are when I'm actively doing detox or killing pathogens.

    The reason that I do the detox or kill pathogens is in the hope of getting my reactivity down lower, so that I do not have to practice avoidance as scrupulously, and of getting rid of the remaining symptoms (such as the 2's that I mention).

    Of course, I could change the ratings to all 3's by spending time in a bad place, but I choose not to do that.

    Best, Lisa
  2. Enid

    Enid Senior Member

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    Hi Graham, Another set of figures for your researches here. I'm a 11 yearer and was severe (bed bound etc) but things seem to have plateaued out and well below pre ME days.

    Present - 2,2,2,2,1,3,2,2,2,2,2.
    Bad - All threes
    Good - 2,2,2,2,1,3,2,2,2,1,1.

    Severest in the early days would have carried all threes throughout good and bad so some improvement. All the best. (I should add that any improvements have nothing whatsoever to with CBT or GET - like any illness one does only what one can daily/hourly - recognised ME supplementation the only aid with life style change).
  3. Graham

    Graham Senior Moment

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    Thanks Enid - you are now number 46 on the list! Glad to hear that you have improved from your worst patch. I'm lucky because I never have been bed-bound, and I do so appreciate it.

    Lisa, I'm afraid you can't find the details of the Chalder scale online (as far as I can see): I got a look at it from a friend who was able to get hold of the training manuals. I have no idea why everything should be so secret, after all, we paid for it! I'm sensitive to mould as well (English spelling!), but as a keen gardener, it's a bit of a contest between pleasure and pain. I have completed your entries - thanks - you are now officially the person with the biggest gap between good and bad patches - 16 points. The previous winner was at 15 points.
  4. slayadragon

    slayadragon Senior Member

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    Yes, that's the point of extreme avoidance -- to leverage the "Good Day/Bad Day" effect as much as we possibly can.

    It's not a random chance that I came up as the winner, that's for sure! My core health is still quite crappy (though better than it was three years ago). I just know how to manipulate my environment so that I'm as well as I possibly can be regardless.

    Can you share with me (privately or here) who the previous winner was? I suspect there's a good story there.

    I wrote Peter White a while back and asked him for some materials, and I guess I will do it with regard to that scale too. I hate doing that though!

    Best, Lisa
  5. Bob

    Bob

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  6. Graham

    Graham Senior Moment

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    Hi Lisa

    Sorry, but I promised that all the names would be confidential. Obviously some people have posted on here, but the vast majority have contacted me directly, and the final set of data won't be in chronological order. I assume that anyone who posts here is happy to chat about it, but nevertheless, their name won't appear on the data either.

    Full marks to Bob though for his full protocol link - I didn't know that was available (or, with the usual ME memory had forgotten - mine rates 3 on good or bad days!).
  7. slayadragon

    slayadragon Senior Member

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    Thanks Bob -- that is really helpful!!!

    Best, Lisa
  8. Graham

    Graham Senior Moment

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    I have got over 50 responses so far: I'm hoping to get around a hundred so that it is of a respectable size. Please do what you can to spread the word around, and tell them how easy it is to complete the questionnaire. The results are proving to be pretty useful, but bigger numbers would carry more weight. If you have heard any comments as to why people are reluctant to answer, please let me know and I'll see if I have a solution.

    You know where I stand on the PACE trial - if we want our voices to be heard, we've got to try all sorts of approaches.
  9. WillowJ

    WillowJ Senior Member

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    I have added this to my signature (as you might already have noticed), but I'm pretty sure I neglected to fill it out myself. Would you send me the excel sheet? I think that would be easier for me.
  10. Valentijn

    Valentijn Activity Level: 3

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    I'm moderate-severe
    today: 1, 2, 1, 2, 2, 3, 3, 2, 2, 1, 2
    bad: 1, 3, 1, 3, 2, 3, 3, 3, 3, 2, 3
    good: 1, 1, 1, 2, 1, 3, 3, 1, 1, 1, 1
  11. Graham

    Graham Senior Moment

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    Thanks Valentijn - you are number 54!
  12. notsosNelly

    notsosNelly

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    Hi Graham,
    Big job to take on! But good luck.

    My score:
    3 yrs now, thought I recovered from mid last year - end last year but relapsed beginning this year, deteriorated from mild early this year to moderate now.

    23231223113
    33332323223
    10010000000
  13. Graham

    Graham Senior Moment

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    Hi NotsosNelly

    Thanks for your scores, but they are puzzling me. A score of 0 means that that particular item is better than when you were healthy (less than usual in strength (0 pts)....where "usual" refers back to how you felt when you were healthy). So does your final set of figures mean that you were feeling better than you did in most items than when you were healthy? I know that some people have included a zero or two in specific cases (e.g. someone who found with ME that she didn't sleep very much - which is the opposite experience that many have), but not a whole run of them.
  14. Boule de feu

    Boule de feu Senior Member

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    Are you still collecting data?
    Would you like mine?
  15. Graham

    Graham Senior Moment

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    Yes please Boule de feu: I have 58 responses now, but I really would like to get the total up to about a hundred so that it carries some credibility. You can post your scores here, send them in a PM, or if you email me at graham.mcphee@gmail.com I can send you an Excel form to put an x in each box.

    It isn't easy to decide on the answers, but it doesn't take long, and we all have the same problem.
  16. Boule de feu

    Boule de feu Senior Member

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    less than usual in strength (0 pts)
    no more than usual (1 pt)
    more than usual (2 pts)
    much more than usual (3 pts)

    TODAY - BAD - GOOD

    Do you have problems with tiredness? 3 3 2
    Do you need to rest more? 3 3 2
    Do you feel sleepy or drowsy? 3 3 2
    Do you lack energy? 3 3 3
    Do you have trouble starting things? 2 3 1
    Do your muscles have less strength? 2 2 2
    Do you feel weak? 3 3 2
    Do you have difficulty concentrating 3 3 1
    Do you find it more difficult to find the correct word? 2 2 1
    Do you make slips of the tongue when speaking? 2 2 2
    How is your memory? 3 3 2

    Boule de feu - moderate to severe (PEM is brutal and puts me back in bed each time)
  17. Graham

    Graham Senior Moment

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    Thanks Boule de feu

    You are number 59 in the list. Hope you hit a good patch soon.
  18. Boule de feu

    Boule de feu Senior Member

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    Could you change it to 60? I will forget it, for sure. LOL Just kidding!
    Can't wait to see what you will come up with. Good luck!
  19. Graham

    Graham Senior Moment

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    You must be the first person I have come across preferring to be 60 than 59!
  20. Boule de feu

    Boule de feu Senior Member

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    59 is a big number to remember... with brain fog.
    However, 69 is a pretty easy number to remember...
    (hmmmm... who said that? not me!) LOL

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