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NPR Covers the Controversy Over the Definition Effort

Discussion in 'Institute of Medicine (IOM) Government Contract' started by slayadragon, Jan 30, 2014.

  1. alex3619

    alex3619 Senior Member

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    @Andrew, do you have a reference &/or reference and page number for discussion of the review mechanism for an IOM report?
  2. Andrew

    Andrew Senior Member

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    Good question. I'm trying to piece this together for you but I'm still looking for everything I read. I might be missing a piece.

    Here's their website. Look at the bottom.

    http://nationalacademies.org/studyprocess/index.html

    Here's part an email exchange that covers patients and outside experts being allowed to review for errors and oversights before the final publication:

    She said: "You’re correct, the statement of work does not ask the committee to validate any definition with real world testing. The final recommendations will be the result of the committee’s review of and deliberations over the evidence, and the members of the committee (once appointed) and the IOM staff are unable to discuss the recommendations until the final release of the committee’s report. I do, however, appreciate your efforts to bring this information and your perspective to our attention!

    I replied: "You said that the committee and IOM staff are unable to discuss the recommendations until the final release of the committee’s report. Is there any avenue by which a stakeholder such as myself can provide feedback on the recommendations, before the opportunity for revision ends?"

    She replied: "The committee’s recommendations remain confidential until the final release of the report. Before the final release, the report will undergo an independent peer review process by a second committee of experts, but there are no opportunities for public comment or feedback on the report. Confidentiality is crucial for maintaining independence from the study sponsor – if the report was made public in order for you or other stakeholders to provide feedback, theoretically the sponsor could provide feedback as well."


    Now, what remains is whether the panel can refuse to follow instructions from the review committee. Now that I'm looking I realize I might have cobbled this together in my mind from their statements about complete independence and the statement on the website that says: "Each committee must respond to, but need not agree with, reviewer comments the panel does not have to agree with the committee." Now that I see it, they don't really say who gets the final word. I sent an email asking for clarification. I'll also see if I have another source for this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Iirc, on the website it said that the committee had to respond in writing to each point the reviewing panel makes, but don't have to change the report. And the process is overseen by moderators. I don't know what the moderators do.
    Izola and Delia like this.
  4. alex3619

    alex3619 Senior Member

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    @Andrew, yes, this is complicated and all we have is outlines and summaries. I had read that link before, but the details are inadequate.

    The more independence the panel has the better for us though. That is why I would like to nail this down, it might tell us where to put our focus, or where to not put our focus.

    One of the things that worries me the most is that there is no adequate definition of good evidence or evidence rankings for a definitional review. Diagnostic, yes; interventions, yes; defining a disease? Evidence based medicine is almost antithetical to this process. My guess is they make it up as they go along.

    Yet I think you are right, @Andrew, in that if a bad report is produced there is a lack of adequate response to correct it.

    I think the IOM is already discredited on disease definition reviews and related subjects, and they are about to do it again.

    I wonder, after the fact and they fail yet again, if we should get a petition together for statement of No Confidence in the IOM process?
    beaker, Delia, lnester7 and 3 others like this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't remember anyone mentioning that reporters have been invited to any public meetings by us. Maybe we should start doing that.
    Izola, Delia and lnester7 like this.
  6. Andrew

    Andrew Senior Member

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    That's what I thought I saw too. But when I went back, I could not find that statement. Do you remember where it is?

    FWIW, either way, the project is in bad hands. Either the GWS panel incompetent in their coverage. And maybe the review board was, depending on whether they said anything or had the power to do anything.
  7. Andrew

    Andrew Senior Member

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    I believe that unless this contract is stopped, we will be shafted again. It's very seductive to listen to the meeting and hear all the convincing comments from patients and groups, and see the ostensible seriousness with which the panel listens. But we have seen this before. There have been other places where convincing people testified, and others listened the same way, and we still got screwed. Look at all the times someone on the CFSAC explained the science to Dr. Unger. She doesn't care.That's why she kept saying everything on the web site was science based, even though it is not. She knows nobody above her cares if she does this.

    None of this ends up discrediting any of them except in our minds. Look at the NPR article. They call the IOM a prestigious organization that any patient group should be happy to have working on their illness. IOM came out of the gulf war syndrome debacle with their reputation unscathed. .
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  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    And of course CAA provides cover for HHS, since the reporter portrays CAA as the biggest 'voice of the patient' rooting for CDC and NIH as usual. This, is of course, why CAA is so insidious. They are a cancer on us that is going to have to be destroyed when we have dealt with these BS HHS processes.
    Izola, Wildcat, beaker and 2 others like this.
  9. lnester7

    lnester7 Seven

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    Izola, Delia and justinreilly like this.
  10. Ren

    Ren Primum Non Nocere

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    In reference again to censorship and from Jeannette Burmeister's blog, http://thoughtsaboutme.com/2014/02/02/who-is-causing-facebook-to-block-tullers-article/#comments

    "On Monday, January 27, 2014, David Tuller published, on Buzzfeed, a well-researched and factual article”—How “Chronic Fatigue Syndrome” Obscures A Serious Illness“—on ME/CFS and the government’s efforts to redefine the disease. As of right now, 78,331 people have viewed the article. Also, almost 8,000 people “liked” the article directly from the Buzzfeed site by using the Facebook like button.

    Some time last night or this morning, the Facebook share button for this article was disabled by Facebook and Facebook blocked any direct sharing of the piece from the Buzzfeed site. The error message I (and others) received from Facebook when I tried to share the article to confirm the reports of the blocking said, “Your message couldn’t be sent because it includes content that other people on Facebook have reported as abusive...”
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  11. lnester7

    lnester7 Seven

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    Can we talk to Facebook and ask why /who is blocked and come down hard on them????
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It looks as though 'Gulf War Illness' often features PEM:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3683000/?report=classic

    I haven't read the whole paper but it involves a bicycle stress test.

    Maybe GWI is in fact ME/CFS, just with a specific pattern of onset.
    Izola, Delia and justinreilly like this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That's my view on it. And this is a way of getting GWI vets to work with us, since if that's true, our research will be directly applicable to them.
    beaker, Delia and MeSci like this.
  14. Delia

    Delia Senior Member

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    Good job taking screen shots!

    It's a very good idea to take them whenever possible when you are in a position as we are in now.
    Izola and Ren like this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    From IoM brochure. It doesn't say it explicitly, but seems to imply that no changes need to be made as long as the committee responds to all the reviewers' comments:

    "STAGE 4. Report Review

    As a final check on the quality and objectivity of the study, all National Academies reports—whether products of studies, summaries of workshop proceedings, or other documents—must undergo a rigorous, independent exter- nal review by experts whose comments are provided anonymously to the committee members. The National Academies recruit independent experts with a range of views and perspectives to review and comment on the draft report prepared by the committee.

    The review process is structured to ensure that each report addresses its approved study charge and does not go beyond it, that the findings are supported by the scientific evidence and arguments presented, that the exposition and organiza- tion are effective, and that the report is impartial and objective.

    Each committee must respond to, but need not agree with, reviewer comments in a detailed “response to review” that is examined by one or two independent report review “monitors” responsible for ensuring that the report review criteria have been satisfied. After all committee members and appropriate National Academies officials have signed off on the final report, it is transmitted to the sponsor of the study and is released to the public."

    http://www.nas.edu/xpedio/groups/nasite/documents/webpage/na_069618.pdf
    Delia and alex3619 like this.
  16. Delia

    Delia Senior Member

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    May I post your screenshots to Facebook?
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  17. Ren

    Ren Primum Non Nocere

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    @Delia - please use what you can. It was by accident that I caught what I did - it's someone else's words/thoughts, which they did try to publicly share. I was only at the right moment at the right/wrong time. :)

    ----------

    Edit: I glanced through the newest comments and noticed this one: "Zbornak Syndrome!!! Call it Zbornak Syndrome!!! http://en.wikipedia.org/wiki/D..."

    To my understanding, Zbornak was supposed to have CFS at some point on this show. Anyone familiar with this?

    Or this comment: "How about renaming it the Lili Von Shtupp Syndrome? (With my sincere apology to those who suffer from this truly dreadful affliction. I just couldn't help myself.)"

    Von Shtupp is the character from Blazing Saddles who sings, "I'm tired, so tired..."

    So - additionally for the record - I find NPR's judgement of what is acceptable/unacceptable public discourse to be, among other things, bizarre. (And I have to wonder to what extent this is associated perhaps with the age of its readership and their living memory of the yuppie-flu campaign. Just trying to understand.)

    The comments on Buzzfeed seemed much more empathetic and solution-oriented. I'm not sure why NPR readers make a mental leap to fictional television/film characters from the 1970/80s - instead of feeling concern for living, breathing, suffering human beings. Like I said, bizarre. - The Von Shtupp reference though does exemply how the name "CFS" does what it was designed it to do.

    npr cfs comment.JPG npr cfs comment i.JPG
    Last edited: Feb 3, 2014
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  18. lnester7

    lnester7 Seven

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    @Ren " instead of feeling concern for living, breathing, suffering human beings. Like I said, bizarre."
    You should say that in NRP, is a goooooooood point.
    Ren and Izola like this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Love the reference - hilarious film! But the final words aren't even right for 'CFS':

    "Let's face it - everything below the waist is caput."

    So she misses out everything else that is caput!

    Here's the song on YouTube:

    [/user]

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