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'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

Discussion in 'Latest ME/CFS Research' started by Sam Carter, Jan 31, 2013.

  1. Firestormm

    Firestormm Guest

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    Charles raises a valid question on Facebook, Dolphin:

    I would be dismayed if this is the only letter generated from all the charities!
     
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  2. Dolphin

    Dolphin Senior Member

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    I'm not aware of any others that have been submitted by people connected with charities. I'm hoping good letters go in but I think many of the people who take part in this thread might be able to come up with better letters than many ME groups.

    It is a hard fact of life I have come to terms with that if I/we don't do something, something might not be done or done well e.g. a reply to a journal article I thought was problematic.
     
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  3. kaffiend

    kaffiend Senior Member

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    Thanks for the info. I'm writing a letter that focuses on self-report bias, lack of objective outcome measures, and inappropriate sociodemographic matching when defining 'normal' on the PF subscale scores. Another methodological concern relates to patient self-selection. Inclusion criteria included willingness to be assigned to any treatment arms - so along those lines, can someone kindly point me to the number of patients screened for the trial? I've seen these numbers somewhere. I know the final inclusion N was 641.


    Edit: I have not been able to find any CBT studies that control for self-report/social desirability bias. I'm beginning to think this is a major source of CBT treatment effects.
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    Sometimes I'm tempted, but then I end up with some reason not too, like currently fighting off a flu or other infection and feeling feverish and not very coherent. And even when feeling relatively coherent, I lack confidence due to my complete lack of formal biological background. I got a D in it high school bio (barely passing) and only did that well because we were graded on a curve :p
     
  5. Valentijn

    Valentijn Activity Level: 3

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    Sounds like a great focus for your letter :)

    3158 were screened for eligibility, 2260 + 257 excluded at 2 different stages, leaving 641 participants.

    1011 in the first stage didn't have Oxford CFS (fatigue not primary symptom?), 533 in the first stage didn't consent, and 29 unknown exclusions in the first stage. 67 in the second stage didn't have Oxford CFS, and 69 in the second stage didn't consent, and 12 were excluded for unrecorded reasons in the second stage.

    34/160 dropped out of APT
    60/161 dropped out of CBT
    41/160 dropped out of GET
    43/160 dropped out of SMC
     
  6. Dolphin

    Dolphin Senior Member

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    Sounds like a good letter.

    This figure may give the information you are looking for:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/figure/fig1/
     
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  7. Dolphin

    Dolphin Senior Member

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    I've sent you a private message on this.
     
    Valentijn likes this.
  8. kaffiend

    kaffiend Senior Member

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    In the discussion section of White et al. 2013, there is a throw-away line about objective measures being left out.

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    "Objective measures of physical activity have been found previously to correlate poorly with self-reported outcomes (Wiborg et al. 2010), which may be related to the finding that activity patterns in CFS patients are heterogeneous, with only a minority being pervasively passive (van der Werf et al., 2001)."

    ----------------

    However, the findings of van der Werf et al. 2001 don't seem to support the statement of White et al. See below

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    van der Werf et al. 2001
    OBJECTIVE: Changes in physical activity are thought to play an important role in maintaining symptoms in chronic fatigue syndrome (CFS). The aim of this study was to describe intraindividual physical activity patterns in more detail and to identify pervasively passive patients.
    METHODS:
    With help of a movement-sensing device, physical activity levels were registered continuously over a 12-day period in 277 CFS patients. Within this registration period, the 10 largest activity peaks were computed. The intensity and duration of these activity peaks and their subsequent rest periods were described and compared to those of 47 healthy controls. In addition, the patients' 12 daily activity scores were used to identify patients who were characterised by low levels of physical activity throughout the registration period.
    RESULTS:
    The CFS sample had less intense and shorter activity peaks, while the average rest periods that followed these peaks lasted longer. Approximately one-fourth of the CFS sample differed distinctly from the control group and was labelled as pervasively passive.
    CONCLUSION:
    The measurements and classification of actual physical activity levels were found to reduce heterogeneity in the CFS population and therefore could provide the opportunity to optimise behavioural intervention protocols for CFS.
    ----------------------
    Can anyone understand why White et al. cite this study as a reason for leaving out objective measures/actigraphy? I'm really trying to make a good faith effort to understand the rationale before simply calling it out as flawed science.
     
  9. Valentijn

    Valentijn Activity Level: 3

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    I think the two statements are completely unrelated, aside from the authors trying to tie them together in a single sentence.
     
  10. Dolphin

    Dolphin Senior Member

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    I think they're trying to claim indirectly (so it is not easy for people to see what they are saying) that most patients are relatively active and hence one can't expect improvements in their scores. This is baloney for various reasons.
     
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  11. kaffiend

    kaffiend Senior Member

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    It is baloney, evidenced by the very study they cite, since van der Werf et al (it appears the study is from 2000, not 2001) found group differences (CFS/controls) in General physical activity, Peak amplitude, Peak duration, Duration rest after peak, and % activity reduction after peak.

    In any case, we can't read the minds or intentions of the authors. We can only take their statement at face value and as such, it's not a valid argument for dropping actigraphy from either the end of the trial or the 52-week follow up. The protocol was published in 2007, not before van der Werf et al 2000.
     
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  12. Dolphin

    Dolphin Senior Member

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    The full text of the Van der Werf paper can be found in her PhD at: http://www.cfids-cab.org/cfs-inform/Reviewcfs/vanderwerf03.pdf (Chapter 6)

     
  13. user9876

    user9876 Senior Member

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    I was reading this article about placebo effects

    http://harvardmagazine.com/2013/01/the-placebo-phenomenon

    They highlight a study on astma patients who were treated with real drugs and placebos. They found the subjective scores for all methods were the same but objective lung tests showed only the real drugs had an effect. It might be a study worth referencing on talking of objective vs subjective measures.

     
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  14. Graham

    Graham Senior Moment

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    That's a useful one user9876. I'm making a note of that for future reference. Are you charging?
     
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  15. Mark

    Mark Acting CEO

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    I would like Phoenix Rising to be able to submit letters and make position statements etc, officially from the organisation and/or approved/signed by the board or board members, perhaps also endorsed by a long list of members - as well as by others from outside PR - in a 'petition' style.

    I don't know whether members think this would be an improvement on people sending letters individually, perhaps people prefer to send them as individuals and perhaps they often have to be sent by individuals. But if people would like PR to send such letters and see some value in that, that is a fundamental part of the purpose of the Advocacy Team as I see it: for small groups to draft letters together and work on them in dedicated teams, present them to the board and members, get widespread approval and send letters that can have the weight of an organisation and a lot of signatories behind them. Please contact me if you're interested in joining the Advocacy Team in order to do that sort of thing.
     
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  16. Dolphin

    Dolphin Senior Member

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    A letter that has a patient organisation associated with it perhaps might have a slightly better chance of being published, than one an individual, perhaps especially if the individual doesn't have any major qualifications.

    However, to be specific, people need to be involved in writing the letters for journals I would think (letters to newspapers can be different). Some journals may have a maximum number of people they will allow for letters e.g. the Bulletin of the IACFS/ME (now defunct) specified a maximum of three; some journals for full papers like a maximum of six authors.

    Probably with letters to journals it is better that they are not made public before being submitted.
     
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  17. Mark

    Mark Acting CEO

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    The private forums (and other comms and collaboration tools) that we're going to set up for the Advocacy Team will facilitate team working on such letters in private.
     
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  18. Firestormm

    Firestormm Guest

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    CFS/ME: More heat, some light - directions for research and clinical practice: http://jnnp.bmj.com/content/early/2013/02/12/jnnp-2012-304824.short?rss=1

    The above editorial was written by Richard Morris and published 13 February 2013 in the journal JNNP and relates to the breakdown in CPPG in Scotland - the argument being that such disputes are unhelpful when considering treatment a la PACE. Here's the full text: http://jnnp.bmj.com/content/early/2013/02/12/jnnp-2012-304824.extract.jpg

    It sucks but might help in trying to understand their point about objective measures for exercise not being seen as relevant/useful should anyone be considering a contra argument.
     
  19. biophile

    biophile Places I'd rather be.

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    Citing the 2011 paper on the PACE Trial, so he bought the spin; hook, line, and sinker.

    Add the above to the collection of similar such quotes over the last 2 years.

    12 months should be enough time for most patients to recondition if deconditioning is the main problem.

    Morris' argument appears to be: objective measures for exercise capacity eg treadmill test are unimportant because improvements in exercise capacity are neither sufficient nor necessary for (self-reported) improvements in symptoms and function, again citing the 2011 paper on the PACE Trial.

    CBT/GET proponents want it both ways: rely solely on subjective measures because they give better results, conveniently dismiss objective measures because of a lack of favourable results or lack of strong correlation to subjective measures, but then imply that subjective measures are accurately reflective of real improvements in physical function.

    Welcome to the brave new world of "recovery" in the UK, where being fatigued and disabled is normal.
     
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  20. Firestormm

    Firestormm Guest

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    Tahnks Bio. I' not up to coherent narrative this morrow! It did strike me however that they simply take no account of ME being an illness that continues. What I mean is that they seem to figure it begins and it ends. That 'recovery' to 'normal' is not only possible but proved by PACE. Bloody daft if you ask me.......................................
     
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