The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Telebriefing on P2P final report: Tues June 16, 11am EDT

Discussion in 'General ME/CFS News' started by Sasha, Jun 14, 2015.

  1. Sasha

    Sasha Fine, thank you

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    http://my.meaction.net/events/nih-telebriefing-advancing-the-research-on-me-cfs

    My bolding.

    Edit: Thanks to @medfeb below for the following summary of the three journal papers that have been published in anticipation of the report:

    Annals article on the P2P - http://annals.org/article.aspx?articleid=2322804
    Discuss at this thread - http://forums.phoenixrising.me/index.php?threads/p2p-final-report.38120/

    AHRQ Annals Treatment report article - http://annals.org/article.aspx?articleid=2322801
    Discuss at this thread - http://forums.phoenixrising.me/inde...-a-nih-pathways-to-prevention-workshop.38121/

    AHRQ Annals diagnostic report article - http://annals.org/article.aspx?articleid=2322800
    Discuss at this thread - http://forums.phoenixrising.me/inde...-a-nih-pathways-to-prevention-workshop.38122/
     
    Last edited: Jun 16, 2015
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  2. Daisymay

    Daisymay Senior Member

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    Thanks for posting Sasha, do you know, do you have to pay for the phone or is it free?
     
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  3. Sasha

    Sasha Fine, thank you

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  4. Nielk

    Nielk

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    888 numbers in the US are toll free numbers.
     
  5. Esther12

    Esther12 Senior Member

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    This has come up quick. I've got the sense of dread I normally get with CFS stuff... there have been a few glimmers of hope recently, but that just means that it will be more crushing if it's as bad as most CFS stuff.
     
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  6. Valentijn

    Valentijn Senior Member

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    I think it's very reasonable to expect this one to be bad. They gave a lot of weight to PACE in the draft, and have bullshit excuses for ignoring high-quality contrary evidence. Either they set out with an agenda to favor the BPS approach, or the people reviewing the available research were not willing to read beyond the (badly spun) abstracts of many papers.

    But at least we have the IOM report to smack them over the head with now :cool:
     
    Last edited: Jun 15, 2015
  7. SOC

    SOC

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    ***Wishful thinking alert***

    Given that they now know we have the IOM report to smack them over the heads with, what are the odds they'll backpedal on their draft? They probably don't want to look like idiots or dinosaurs (or both).

    If only....
     
  8. Valentijn

    Valentijn Senior Member

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    Yeah, that's the one hope we can hold onto for another 24 hours or so. But it's still a long-shot.
     
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  9. Sean

    Sean Senior Member

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    Esther

    The blurb on that P2P page was updated less than 3 weeks ago, and if it is in any way indicative of what is coming in the final report, then I don't see much comfort in it for the psychs.

    But we shall see soon enough.
     
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  10. Bob

    Bob

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    Sometimes community members record this sort of thing for us and stick it onto YouTube. I don't don't know if anyone is planning to do that this time, but it is very convenient.
     
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  11. Daisymay

    Daisymay Senior Member

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    Thanks Sasha, yes I know Youtube would be so much easier to access.
     
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  12. medfeb

    medfeb Senior Member

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    The published journal articles for P2P and AHRQ have been posted online - these are both in the Annals. The final P2P report is not yet available

    Edited: Haven't read the report yet but someone said it looks like its probably the final report.

    Edited to add the links to threads that Dolphin created for discussion of each article.

    Annals article on the P2P - http://annals.org/article.aspx?articleid=2322804

    AHRQ Annals Treatment report article - http://annals.org/article.aspx?articleid=2322801

    AHRQ Annals diagnostic report article - http://annals.org/article.aspx?articleid=2322800
     
    Last edited: Jun 16, 2015
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  13. Denise

    Denise Senior Member

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    I just found two additional articles in Annals:


    Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop


    http://annals.org/article.aspx?articleid=2322800


    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness

    http://annals.org/article.aspx?articleid=2322808
     
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  14. Bob

    Bob

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    Thanku @medfeb and @Denise. Well spotted.

    A nice bit of bed time reading. :sleep:
     
  15. Bob

    Bob

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    Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop
    M.E. Beth Smith, DO; Elizabeth Haney, MD; Marian McDonagh, PharmD; Miranda Pappas, MA; Monica Daeges, BA; Ngoc Wasson, MPH; Rongwei Fu, PhD; and Heidi D. Nelson, MD, MPH
    http://annals.org/article.aspx?articleid=2322801
    I was wondering why I've never heard of rintatolimod, if it has some efficacy. It's another name for Ampligen.
     
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  16. Esther12

    Esther12 Senior Member

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    I've only skimmed through them all, but it looks a bit bad and disappointing to me. It could have been even worse.

    That's not a huge consolation.

    Maybe it's moving things in a slightly more reasonable direction that might pay off in fifteen years time, but I could see nothing there that will really help improve the obvious problems that are occurring right now.
     
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  17. Kati

    Kati Patient in training

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    In regards to this paper

    http://annals.org/article.aspx?articleid=2322801
    Conclusion:Trials of rintatolimod, counseling therapies, and graded exercise therapy suggest benefit for some patients meeting case definitions for CFS, whereas evidence for other treatments and harms is insufficient. More definitive studies comparing participants meeting different case definitions, including ME, and providing subgroup analysis are needed to fill research gaps

    They didn't even take into account that Oxford definition is different from CCC.

    Garbage in, garbage out.
     
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  18. SOC

    SOC

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    It bothered me a lot that P2P, a supposed US-based initiative, considered any research using the UK Oxford criteria which are majorly flawed. Oxford doesn't come close to defining the same illness as the ICC, the CCC, Fukuda, or even the CDC empiric, which is pretty bad itself.

    I second "Garbage in, garbage out".
     
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  19. Kati

    Kati Patient in training

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    But they mentioned it was garbage in their draft report. I just don't understand how the draft report and the articles presented to journals are so different
     
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  20. Dolphin

    Dolphin Senior Member

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    I think each paper should get separate threads. Or at least it would be better if not all four of them were discussed on this thread.
     
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