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The P2P Draft Systematic Review Is Up

Discussion in 'Action Alerts and Advocacy' started by Nielk, Sep 22, 2014.

  1. Nielk

    Nielk

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    http://www.occupycfs.com/2014/09/22/draft-systematic-review-is-up/

    Jennie just posted this"

    I hope many of you will take the time to read this carefully. We have till October 20th to comment on this.
     
  2. alex3619

    alex3619 Senior Member

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    CBT good, GET good, PACE trial strong evidence. What else did anyone expect?
     
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  3. biophile

    biophile Places I'd rather be.

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    I probably won't get around to looking at this systematic review in much detail before Oct 20, but I noticed a significant problem with the evidence about employment and CBT/GET, which they later concede is low strength evidence.

    Mysteriously absent from the systematic review is the PACE Trial employment outcomes (McCrone et al 2012), the largest trial on the issue: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0040808

    The employment and welfare etc outcomes were not significantly different between CBT, GET, SMC groups.

    Why isn't that important information mentioned in the systematic review?

    They mention the Work and Social Adjustment Scale (which is not the same as employment) results from the PACE Trial as "employment outcomes", but fail to include the actual employment outcomes?

    I also can't find any mention of the actometer (null) results for CBT/GET trials, or walking test results for the PACE Trial.
     
    Last edited: Sep 24, 2014
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  4. biophile

    biophile Places I'd rather be.

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    But looking at the Lancet paper I count 53/641 formal withdrawals = 8.3% withdrawing?

    (and an additional 32/641 or 5.0% lost to followup)

    http://www.thelancet.com/journals/l...3611600962/images?imageId=gr1&sectionType=red

    Errors in a review make me feel uneasy about other potential mistakes. Did I do something wrong?
     
    Last edited: Sep 22, 2014
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  5. Sean

    Sean Senior Member

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    This one is scaring me. It will have the superficial appearance of independence and objectivity.
     
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  6. Hope123

    Hope123 Senior Member

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    My suggestion is if you read something you disagree with or that deserves a qualifier, write in your comments.

    In addition, if there is something you DO like, comment on that as well.

    Also, if posters don't mind, I would say feel free to send in comments posted by other PR members that you agree with. That way, they can see which areas ME/CFS patients care about the most and also this gives the impression we are paying attention to things.

    Also, note that the public comment period on the draft report by the NIH P2P Committee members, which incorporates not only this draft technical report but also presentations to the Committee in December (you can register to watch it live online here: https://prevention.nih.gov/programs...ention/upcoming-workshops/me-cfs/registration) has been extended to 30 days (near Jan 12, 2015) from 14 days.

    That extension is partly because of Rep. Zoe Lofgren's letter to NIH's Dr. Frances Collins. Several advocates asked for an extension of the public comment period so Rep. Lofgren's office responded to that. If you live in the San Jose, CA area or even if you don't, drop them a line thanking them for their work on advocating for ME/CFS and for this extension. It is rare for members of Congress to receive thank-yous so we can make our issue stand out by being different and polite.

    Her e-mail form only takes responses from people who live in her district but the bottom of her homepage allows snail mail or calls to be made to her office from anywhere:
    http://lofgren.house.gov/contact/

    http://lofgren.house.gov/
     
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  7. Hate ME/CFS

    Hate ME/CFS

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    The NIH P2P is a death sentence for CFS/ME patients.
     
  8. A.B.

    A.B. Senior Member

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    The review claims CBT results in better employment outcomes, on page 5. Evidence to the contrary is ignored as you said.

    Another weakness of the review is lumping different definitions together. We already know that the Oxford definition applies to a different group of patients than the ICCC. I see no justification for assuming that conclusions based on one definition apply to another. Speaking of ME/CFS as single illness is hopeless.

    My sympathies to patients who will be affected by this review.
     
    Last edited: Sep 23, 2014
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  9. Sean

    Sean Senior Member

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    From pages 27-31

    Mysteriously absent from the systematic review is the PACE Trial employment outcomes (McCrone et al 2012),…

    says biophile, and I can't spot it in the references listed in this section either. (Ref Numbers: 76, 78, 79, 84, 89, 98)

    Also worth noting that 5 of the 6 refs are from the same basic crowd and ideology.

    No bias here, folks. Move along...

     
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  10. A.B.

    A.B. Senior Member

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    This sounds disturbingly Wesselyian (in the Conclusion).

    It is not the diagnosis that causes harm - it's framing the illness as psychogenic that causes harm.
     
    Last edited: Sep 23, 2014
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  11. beaker

    beaker ME/cfs 1986

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    I shudder to think about the money spent on this, that could of been spent on research.
    Shameful.
     
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  12. medfeb

    medfeb Senior Member

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    Please send in comments as Hope123 suggested.

    But even if you do not, please keep providing your comments here. Comments like those above that point out the deficiencies and oversights are incredibly useful for those who will be sending in comments.

    Thank you to all who do!
     
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  13. medfeb

    medfeb Senior Member

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    Biophile
    This study -
    McCrone P, Sharpe M, Chalder T, et al. Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS ONE. 2012;7(8):e40808. PMID: 22870204.​
    was excluded from consideration in the review because they said it looked at the wrong outcomes.

    The outcomes that they said they considered were
    We considered outcomes of overall improvement, fatigue, function, quality of life, and employment which we considered clinically significant and conducive to the systematic review methodology. Given the breadth of symptoms in ME/CFS, we a priori elected to not review symptom related outcomes except for fatigue. (P.124)​

    Hard to guess why they excluded that paper unless they excluded it based on the abstract alone.

    Great catch
     
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  14. Sidereal

    Sidereal Senior Member

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    This little gem is buried in the Discussion:

     
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  15. user9876

    user9876 Senior Member

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    PACE gets reported as a good quality study but I thought (I've not checked) that at least some of the assessments were not blinded and its very hard to do. Also they have not fully reported results - in fact they have barely reported any of the values defined in the trial protocol.

    Edits: Thinking a bit more about it since primary outcomes are based on patient reported questionnaires and patients are not blinded then the primary outcomes are not blinded. I think that will be true for all CBT interventions.
     
    Last edited: Sep 23, 2014
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  16. user9876

    user9876 Senior Member

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    They also excluded the Rituximab study due to its duration
     
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  17. Esther12

    Esther12 Senior Member

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    Information about who was involved in this seems to be largely just marked as:

    It would be helpful to know who was involved in the draft.
     
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  18. NK17

    NK17 Senior Member

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    Are you talking about the new multi center Phase III study that just started in Norway?
     
  19. user9876

    user9876 Senior Member

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    No the excluded the original study (See the appendix of excluded studies)

    With Exclusion code 12
     
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  20. NK17

    NK17 Senior Member

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    Exclusion Codes are clearly an expression of pure bureaucracy. We are fighting a war against a big machine.
     
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