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Live webcast IoM meeting Jan. 27th 1:pm starting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 27, 2014.

  1. Ember

    Ember Senior Member

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    Posted by Wildaisy:
     
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  2. alex3619

    alex3619 Senior Member

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    The claim made at one point that the HHS will have no contact with the panel aside from administrative things, and hence by implication there will be (edit) no undue influence, is directly contradicted by earlier testimony.

    The problems are largely methodological and procedural, which we have already seen with the haste, secrecy and complete disregard for stakeholders. The P2P panel will put together an evidence base review which will be provided, either in outline (due to time constraints) or in full, to the panel. This review will contain inherent structural bias in keeping with how these things are done. That review should be publicly available at some point, and we really must see it, and scrutinize both the review and the methodology for the review.

    If you want to railroad a panel you don't do blatant panel stacking. You limit the terms of reference then control the allowed information. It doesn't even matter if this is intentional or just a side-effect of the process, the outcome is the same.

    PS Edited to add the word "no" which should have been there but my brain glitched.
     
    Last edited: Jan 28, 2014
  3. Nielk

    Nielk

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    Moreover, Klimas and maybe another panelist are serving on both the IoM and the P2P committees. How is that going to work?
     
  4. shannah

    shannah Senior Member

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    ... or are they just getting more selective and polished in their language? There seems to be an awful lot of 'doublespeak' sometimes. Often I'm left feeling that what they say (carefully crafted) and what they do are two different things.
     
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  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'm going to play a game of telephone. Except the message won't have to go around a whole circle to get ridiculously distorted. I just needs to go in my ear and out my typing fingers due to my brain fog making a mess of my thoughts.

    So, here is my cartoonish memory of Jeannette's beyond fabulous speech yesterday. I will then compare it to the real thing when it comes out, or the transcription on mecfsforums.com if it is posted there.
    _____________

    Jeannette:
    "Quo Warranto? (i.e. 'By what legitimate authority do you exist?'). You are an illegitimate and unlawful medical entity akin to a back-alley abortion clinic. I have personally filed a federal lawsuit to uncover your secret ploys. My husband is hungry for litigation, but I have asked him to wait to see if you will slink away and disband after this meeting.

    You are not qualified. Half of you are ME rubes who just fell off the turnip truck. You can not produce any meaningful definition. That prospect is insanity (as Mindy said).

    Fukuda destroyed Millions of lives, but you will not be permitted to commit a similar offense.

    If you draft a definition, it will be immediately housed in a reliquary and shipped to the the Ripley's Believe It or Not Museum warehouse like at the end of Raiders of the Lost Ark.

    I will then retrieve it from the warehouse and grind it into fairy dust with lawsuits and public outcry. Your fairy dust will be scattered to the four winds, to live in memory only.

    Thank you for your kind attention." :):thumbsup::D:rofl:
     
  6. alex3619

    alex3619 Senior Member

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    Maybe we should start a website called "The Government's View, Not." and post everything they do in a satirical manner.
     
    aimossy likes this.
  7. akrasia

    akrasia Senior Member

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    Danny ze Dog posted this on FB this morning:

    "Resistance is carried out not for its success, but because by resisting in every way possible we affirm life."
    - Chris Hedges
     
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  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The panelists aren't bound by anything legally. They will receive no compensation (i.e. 'consideration') and without any consideration, no contract exists. They are volunteers, so legally at least, they can basically do what they want.

    They may be reluctant to rock the boat and not follow orders, since they are scientists, a group it seems to me that likes to follow rules. Also they may not want to offend the IoM which is prestigious. They may feel they have an obligation to do more than just endorse CCC since that might not be much work.

    But it is possible for them to endorse the CCC practically, legally and probably even under the terms of the statement of work (a problem is we don't know what the task order says). Does CCC provide subgroups?

    I didn't hear all of Nancy Lee's talk, but I think she was giving them a wide berth to do what they saw fit. Is that right?

    Anyone who doesn't agree with the consensus can write a dissent which will be included in the report.

    I really don't think that anyone of our experts or anyone who sides with us should resign. They will just fill the slot with a lackey. Somewhere it says a consensus should be achieved. If we can't get CCC thru, then at least we can disrupt the consensus which will incredibly undermine the resultant definition, especially in comparison to CCC and ICC which were consensuses. The best thing would be if all our experts stick together no matter what and agree to the same consensus or dissent. That would have a lot of power.

    No, the money won't go back to ME research. But the important thing is the definition (and if the government saves some money, so much the better, even if it doesn't go into ME research).

    I think just about everyone was about to burst out laughing.
     
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  9. Chris

    Chris Senior Member

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    I too was very, very disturbed by Susan Maier--who seemed proud of the fact that she had known nothing about ME before--just the person for the job, obviously. I was also left more confused than ever about the process of this crazy P2P thing--especially when she explained that the relationship between the experts who would testify and the panel of explicitly non-expert people ("opinion leaders" in various fields--just what we need, industrialists, financiers, lawyers)- her analogy was experts giving testimony before jurors at a trial. Has she forgotten that a jury that could not understand DNA evidence acquitted OJ Simpson a good many years ago? One needs to know something in order to understand difficult material--is our fate going to depend on how persuasive a researcher can be in front of an ignorant panel? Is this "democracy" at work--in a new guise? I was just appalled.

    I think the IOM just might--slim chance, but just might--produce something useful; I see nothing but negative consequences from that insane P2P thing--and I have not even got started on the inappropriateness of EBM to this purpose--EBM, for all its weaknesses and faults, can help avoid some disasters produced by ill-tested interventions. But as a way of evaluating research it strikes me as being way out of its depth--again, the only people who can properly evaluate research are other researchers in the field. Heaven help us!
    Chris
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, having all non-ME-experts, much less non-scientists and non-medically-trained people is totally insane.

    The jury analogy fails in my mind. You are right about the OJ trial. Jurys in criminal trials with technical evidence have long been controversial. And you don't even have a right to a jury in civil cases. Judges will deny requests for juries if the evidence won't be understood by the jury (because it is technical, etc). There are even specialized courts like water rights courts and tax courts bc it's realized that even judges need specialized training to hear some kinds of technical cases.

    Also, Maier conveniently didn't answer Lily Chu's question/point that the P2P process is only for non-controversial topics. I think that point is our best argument (though we have other very strong ones too), it's so cut and dried.
     
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  11. akrasia

    akrasia Senior Member

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    Justin wrote:

    This goes to the very heart of the problem of the relationship of mainstream advocacy to the DHHS. Groups like the CAA were enlisted in the fiction that m.e. bore no stigma in research circles and real world practice. It rendered this community unable to see just how marginalized it was by maintaining the illusion of normality and business as usual. Acknowledging the "controversy" surrounding the disease would raise the question of responsibility. The bid for the appearance of seamlessness would be lost.

    Can an entity like the IOM, a servant of the DHHS, no matter what their claims of autonomy, even acknowledge the truth that there is a controversy that has led to an ongoing violation of human rights without implicating US government policy framed by Hillary Johnson, the other day, as diabolical.

    The IOM process, ironically, has allowed this voice of indictment by the more militant members of the patient community to be articulated.

    I am eager to read Eileen Holderman's contribution.
     
    Last edited: Jan 28, 2014
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  12. shannah

    shannah Senior Member

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    That last slide of Unger's from CDC's presentation comparing certain symptom severity in ME as compared to some other illnesses, did anyone catch if it was explained what criteria was used in selecting which illnesses to use to compare? I'll try posting a copy here.

    [​IMG]
     
  13. Nielk

    Nielk

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    Is it a fact then that this panel has been formally approved as it stands?

    It's interesting to me that they invited our comments as to the make-up of the panel, yet nothing was mentioned about it at the meeting.
     
    Last edited: Jan 28, 2014
  14. leela

    leela Slow But Hopeful

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    I am still totally confused by what relevance the P2P thing has to this panel, and who is choosing what data the panel will be reviewing?
     
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  15. Ember

    Ember Senior Member

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    Posted by Wildaisy: "This is what Jeannette Burmeister said:"

    Wildaisy also posted: "This is the one Jeannette had prepared to present at the meeting, but she rewrote. I still think it is great, so she is allowing me to post it here."
     
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  16. Bob

    Bob

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    That graph is an excellent demonstration of why the existence of 'fatigue', 'sleep disturbance' and 'pain' cannot be used to make a reliable diagnosis of ME. (I hope the IOM committee noticed it.)

    (@shannah, I didn't see Unger's presentation.)
     
    Last edited: Jan 29, 2014
  17. alex3619

    alex3619 Senior Member

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    The experts who present on the P2P eventually may or may not be biased. The evidence base provided may well be biased, something I am writing a blog about which might form a submission to the panel. The process itself is a bureaucratization of science and medicine. Its a translation of the science and medicine into bureaucratic policy. It is NOT science, nor is is medicine.
     
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  18. Nielk

    Nielk

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    What is 'pain behavior'?
     
  19. shannah

    shannah Senior Member

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    Good question!
     
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  20. Ember

    Ember Senior Member

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    Tuesday,January 28, 2014
    By Mindy Kitei


    "Below is my testimony from yesterday's conference at the Institute of Medicine:"
    More...
     
    Last edited: Jan 28, 2014

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