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Development of an activity pacing questionnaire for chronic pain and/or fatigue: a Delphi technique

Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 26, 2013.

  1. Dolphin

    Dolphin Senior Member

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    I think this article (although not the abstract itself) gives quite an interesting insight into what "pacing" has come to mean among healthcare professionals in the UK. I say healthcare professionals as only four patients completed it* and they were recruited from a physiotherapy clinic so might have been influenced by how the term was used there and/or what they had been taught.

    *They did ask 52 patients in total but for one reason or another only a small number completed the Delphi process.




    *I've given each sentence its own paragraph
     
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  2. Dolphin

    Dolphin Senior Member

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    The suggestion of encouraging doing something even on bad days is based on ideas of doing consistent amount, which is mentioned elsewhere also. I have big question marks over safety of this approach in ME.

    Also, doing things at a slower pace (excluded) could also to me be part of pacing.

    Only 37 of the 94 suggestions made the cut which suggests other useful parts of pacing could also have been excluded.
     
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  3. Dolphin

    Dolphin Senior Member

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  4. Firestormm

    Firestormm Guest

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    Thanks Dolphin. I'd like to come back and review more closely when I am better able.
     
  5. Dolphin

    Dolphin Senior Member

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    Misc. comments:

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  6. Dolphin

    Dolphin Senior Member

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    I don't have the questionnaire text but the underlined bits in this gives a bit more information on the contents

     
  7. biophile

    biophile Places I'd rather be.

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    So the blurring of pacing and GET continues?
     
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  8. alex3619

    alex3619 Senior Member

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    They keep changing names and reworking definitions. Maybe we should change what we call pacing to some other name?
     
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  9. Valentijn

    Valentijn Activity Level: 3

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    How about "Definitely Not GET"?
     
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  10. Sean

    Sean Senior Member

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    I can't believe it's not GET.
     
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  11. biophile

    biophile Places I'd rather be.

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    Traditional pacing?
     
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  12. alex3619

    alex3619 Senior Member

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    Hmmm, some more thoughts. There is a presumption in the research itself. It possibly presumes that the validity of a pacing approach they come up with is equally valid for different disorders. That has yet to be demonstrated. However if its strictly used as a tool for starting discussion around individual patients, with individual case histories, then it may have some validity.

    Like Dolphin, I have big issues with presuming safety when used in ME. There has never been a proper analysis of what safety actually means for ME, although the Harms paper comes closest. Its simply presumed that we respond like other disorders. The patient experience, patient problems, myriad patient case hysteries have not been used to assist even coming up with proper questions about how to assess harm from exercise in ME.

    I am reaching the point where any study that does not seriously address the repeat VO2max testing in ME has little relevance. That research is now a decade old. Its time they took it into account, and passed time.
     
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  13. Sean

    Sean Senior Member

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    Their persistent failure to incorporate these kind of highly relevant and objective measures into basic ME research standards is, to me, clear evidence they are avoiding genuine science like the plague.
     
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  14. Bob

    Bob

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    But there have been a number of papers investigating post exertional symptomatic exacerbation, over the years.
    They're just not as prolific as the authors pumping out the psycho-social research.
    The meaningful research is swamped by the irrelevant research.
     
  15. Bob

    Bob

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    benign patient-led pacing ?
     
  16. Dolphin

    Dolphin Senior Member

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    To be serious, "symptom-contingent pacing" explains a lot of what ME patients are looking for.
     
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  17. Purple

    Purple Bundle of purpliness

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    Alex - do you know when the first study on this was published? I.e. can you provide the link to it. I think the fact that this has been known for so long, is so remarkable and has not become integral part of ME science needs to be repeated regularly and often.
     
  18. alex3619

    alex3619 Senior Member

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    Purple It was published in 2003 iirc, but I do not have a link handy. It was a Snell paper. However this was a first tentative finding. By 2009 or so it had gone way beyond tentative. I may have a look for a link, if I find one handy I will post it here.

    PS VanNess JM; Snell CR, Strayer DR, Dempsey L, Stevens SR. Subclassifying Chronic Fatigue Syndrome through exercise testing. Med. Sci. Sports. Exerc. 35(6): 908-913, 2003. The protocol in the study used two or three tests, but weeks apart. I will have to find out which of their studies used a repeat test, I thought it was here but it isn't.

    This is an even earlier one from 2000: http://cfids.org/archives/2000rr/2000-rr4-article02.asp

    More links here: http://www.workwellfoundation.org/research-and-latest-news/

    http://informahealthcare.com/doi/abs/10.1300/J092v14n02_07
    This one talks about repeat tests 24 hours apart, in 2007.
     
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  19. alex3619

    alex3619 Senior Member

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    Patient Centered Pacing?
     
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  20. Dolphin

    Dolphin Senior Member

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