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CBT for CFS in Adults: Face to Face versus Telephone Treatment-A RCT (Burgess et al)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 17, 2012.

  1. Dolphin

    Dolphin Senior Member

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    The employment data wasn't published. The first Cochrane review of CBT highlighted this. This mysteriously disappeared from the second Cochrane review i.e. it wasn't mentioned that the employment data was missing. I wrote to the authors saying I wasn't happy with it and that I expect any update to include it. I got a reply. We shall see what happened.

    It is interesting that it wasn't reported as at least one of the (Sharpe et al) authors has worked for insurance companies. They know it is important data.

    ----------
    This details the point I'm making above:
  2. Snow Leopard

    Snow Leopard Senior Member

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    The 2008 review summary is ambiguously worded - when doing the other comparisons, they say which group it favoured, but for "improvement in work status", (page 21) they simply state there was a significant difference. Strange...
  3. Dolphin

    Dolphin Senior Member

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    Where is that? I can't see it and it is not showing up when I search for "work".

    This is on page 17 (page 21 of pdf) in what I have:
    Also (page 23 of pdf, printed page 19):

  4. biophile

    biophile Places I'd rather be.

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    PACE data isn't all that encouraging either

    I deleted a post that essentially had the same data (p74) as what Dolphin posted about employment status (p17).

    So the only study in Cochrane 2008 (Huibers 2004) which looked into employment status found no significant difference between CBT and usual care. [EDIT: A later version of the same Cochrane 2008 review includes data from Sharpe 1993 which found a significant difference between CBT and usual care.]

    As for the PACE Trial, the 2007 protocol states that:

    The 2011 Lancet paper only reports data from The Work and Social Adjustment Scale (WSAS) and showed a small advantage for CBT and GET over SMC and APT, one that is a self-rated subjective measure about how limited one feels, so we don't know how well it correlates with actual employment status in CFS, which the CSRI would provide better detailed data for. Some of the PACE authors published a study which included data from the PACE Trial to investigate "psychometric" correlates of the WSAS with CFS (http://www.ncbi.nlm.nih.gov/pubmed/21843745):

    I haven't seen the full text so I don't know "reliable and valid" the WSAS data is when compared to actual employment status, the abstract only talks about clinical symptoms and physical function and the walking test. And whatever happened to the CSRI data from the PACE Trial? Will this be in a future paper or did PACE once again prefer to report the more optimistic subjective scales about how impaired one feels instead of the more objective data about how much one actually worked etc?

    It is odd that the PACE Trial was co-funded by the UK Department of Health and Work and Pensions but the employment outcomes weren't included or promoted like the patients "getting back to normal" (cough), I guess these figures aren't too encouraging? At this stage it would not surprise me if a large proportion of patients within "normal" range (cough again) for both fatigue and physical function are still actually unemployed or at least underemployed due to CFS related impairments. Looking at the 2007 protocol, they intend on annual followups, so it isn't too late for them to take actigraphical measurements as well (which hopefully would not be too affected by reactivity bias)?
  5. biophile

    biophile Places I'd rather be.

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    Feel free to use the gyroscope theme for your book, hehe! A spinning top is more obvious but a gyroscope symbolizes the layers of spin.
  6. Esther12

    Esther12 Senior Member

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    Nightmare - sorry it's been so long for you. The first few years I was ill (probably longer) it seemed unfathomable that anyone could be ill for a long time with 'Chronic Fatigue Syndrome'. As time when by, the quackery around CFS became reassuring: "No way a condition would be treated like this if it could be serious." Now I've realised it's just that different standards are held for those diagnosed with CFS.

    If they start excluding people who have been ill for over ten years, it will give them more positive prognosis figures! "Thanks to our work, everyone now recovers from CFS."
    Dolphin likes this.
  7. biophile

    biophile Places I'd rather be.

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    They do not explain the reason behind this "concern". If it isn't CFS after 10 years then what is it? Would a revised Oxford criteria state that "fatigue" must last a minimum of X months but no longer than 10 years? They probably wanted to exclude such long-term (ie presumedly "recalcitrant") patients from interfering with their results. I thought some biopsychosocialists were proud that in one or two studies the duration does not predict response to CBT, although average duration in such studies is usually only several years rather than decades. Perhaps now they have caught on that prognosis becomes worse over time and are fear-avoidant about including such patients in their studies because the statistical advantages of CBT in research are fragile.
  8. Snow Leopard

    Snow Leopard Senior Member

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    The very next paragraph is:
    Note that graph 1.18 suggests it is in favour of the control group.

    The study that you quoted was the Dutch GP delivered CBT study (Huibers et al. 2004). Their conclusion was that GPs cannot deliver CBT effectively, but I never felt their reasoning was satisfactory... http://www.ncbi.nlm.nih.gov/pubmed/14990522
  9. biophile

    biophile Places I'd rather be.

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    More smoke and mirrors from Chalder et al

    I had a quick look at the full text of the WSAS study (http://www.kcl.ac.uk/innovation/gro...2011ThereliabilityofWASAinCFSpatientsJoPR.pdf) and my initial assessment based on the abstract seems correct. They also make this claim which I investigated and discovered was nothing more than smoke and mirrors:

    However, the cited paper does not appear to discuss work/employment/occupational related outcomes for CBT but only for GET (http://occmed.oxfordjournals.org/content/55/1/32.full.pdf):

    Furthermore, these claims appear to be unsubstantiated even for GET ...

    * Fulcher & White 1997 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2126868/pdf/9180065.pdf) : comparison of occupational status was uncontrolled at followup because it was a crossover study and did not account for dropouts etc, the authors ackowledge this weakness but then try to dismiss it by claiming that spontaneous improvement was an unlikely explanation because it didn't occur in a "similar sample" in another study.

    * Powell et al 2001 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC26565/pdf/387.pdf) : reports work status at baseline but not post-treatment.

    * Powell et al 2004 (http://bjp.rcpsych.org/content/184/2/142.full.pdf) : followup of Powell et al 2001, did not report occupational status at any point.

    * Wearden et al 1998 (full text not easily available but a Cochrane 2004 systematic review appears to refer to this study as "Appleby 1995" because of multiple publications - http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub2/pdf) : the improvement in "functional work capacity" in the GET group compared to the control group at 12 weeks and at 26 weeks was not statistically significant.

    So all in all, no good evidence for the statement that "occupational outcomes tend to improve substantially for CFS patients who receive treatment such as [CBT] and [GET]".
    Dolphin and oceanblue like this.
  10. Esther12

    Esther12 Senior Member

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    Thanks a lot for that biophile. Something I find is that when their references are checked, they often do not support the claims being made - I know it can be a lot of work to do so though.

    Thanks to all the people digging in to this paper actually - I've been a bit too tired to follow the discussion properly, but I'm definitely planning to come back to it when I've got a bit more energy.
  11. biophile

    biophile Places I'd rather be.

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    @ Snow Leopard and Dolphin re work status in the Cochrane 2008 CBT systematic review. It appears the older versions of the same paper do not contain the relevant data from the 2nd study (Sharpe 1993) but the current online PDF file does.

    @ Esther12. Yes, this seems to happen frequently when I decide to investigate their claims, enough that I can't take what they say at face value anymore.
  12. Dolphin

    Dolphin Senior Member

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    Full text available at: http://www.kcl.ac.uk/innovation/groups/projects/cfs/publications/index.aspx
    ETA: (after reading on) I see you have it now

    Thread discussing paper at: http://forums.phoenixrising.me/show...FS-reliability-and-validity-of-the-WSAS-(PACE
  13. Dolphin

    Dolphin Senior Member

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    I have it filed in my mental filing cabinet that the PACE Trial authors said they would be publishing the employment data.

    I'm not sure if it is just based on this reply: http://www.meassociation.org.uk/wp-content/uploads/2011/06/FOI from Queen Mary.pdf which is a bit vague or something more definite.
  14. oceanblue

    oceanblue Senior Member

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    I too thought the authors had said employment data would be published in future, but can't remember where
  15. Snow Leopard

    Snow Leopard Senior Member

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    They said they were going to publish it along with a cost effectiveness analysis. I won't hold my breath for it though.
  16. biophile

    biophile Places I'd rather be.

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    I wouldn't hold my breath either, especially if the results were minimal. It might be based on this ...

    I smirked at this statement though, "careful reading will make it clear that recovery is not reported in the Lancet paper". Why should it require careful reading? They certainly didn't make it clear enough at face value in the paper itself (especially with the editorial erroneously reporting normal as "a strict criterion for recovery") and during the press conference when promoting the participants "getting back to normal" lives. How else was normal supposed to be interpreted by the audience? In their authors' reply, they state "It is important to clarify that our paper did not report on recovery; we will address this in a future publication." Apparently it wasn't important enough to prevent medical journals and newspapers alike from falling for the spin about "normal" range.

    Even if there are small improvements to occupational status, without actigraphy it would be more difficult to know whether activity substitution occurred.
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  17. Snow Leopard

    Snow Leopard Senior Member

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    It certainly makes you wonder why they wouldn't/didn't publish recovery data (as per the protocol) in their big Lancet paper. But then again, I don't expect much scientific honesty from these guys anymore.
  18. Dolphin

    Dolphin Senior Member

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    Somebody asked me about this post of mine and the missing SDs.

    http://forums.phoenixrising.me/show...Burgess-et-al)&p=234483&viewfull=1#post234483
    --
    I thought I'd re-post my reply here for what it is worth.

    ----
    It's good you are interested in these things.

    The Lloyd point is certainly bad. I'm not sure how bad the issue is with the Sharpe paper.

    The Sharpe et al paper can be seen at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2349693/pdf/bmj00523-0026.pdf .
    So they do give CIs for the difference. And they did at least give the necessary data when the Cochrane reviewers asked.

    However, Lloyd and Hickie are still very active in the field so it is pretty bad that, as well as not reporting the SD in the original paper, they haven't provided it for later meta-analyses.

    This came up in another meta-analysis:
    In this paper the authors said:

    But they obviously didn't get a reply because they said:
    Given that the results in Lloyd et al weren't good for CBT
    this means the effects of CBT look better than they actually are because their data hasn't been included. Lloyd and Hickie are CBT/GET fans so this would suit them.

    Bye,

    Dolphin
  19. biophile

    biophile Places I'd rather be.

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    Note that Powell et al 2004 is a followup of the same patients from Powell et al 2001, so they did "measure" occupational status at baseline as reported in the first paper but did not mention this in the second paper. Obviously the authors thought about the issue of occupational status and decided to either not take followup measurements or not report them if they did take them.
  20. Snow Leopard

    Snow Leopard Senior Member

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    What exactly is "functional work capacity" in this context? (Wiley site is down at the moment due to maintenance)

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