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IOM List of Provisional Committee Members has been posted 3 Dec 2013

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Denise, Dec 3, 2013.

  1. Denise

    Denise Senior Member

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    The provisional committee roster for the IOM project has been posted here:

    http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592


    It is worth noting that nearly half (7/15) of the names on the list are people we are familiar with. Perhaps IOM has listened to us (and learned from some of the mistakes with GWI committees). (Hopefully they did!)

    You will notice that Lily Chu is on the list. :)



    There is a 20 day comment period on this list.

    You may remember that some people have agreed to help (Jennie Spotila) gather information on the folks on this list.

    That information will hopefully be available in less than one week from today so that we can submit well reasoned comments on those on this list.

    update - (I do not endorse this expenditure of 1 million US dollars. I think that one way to continue to fight the project is to submit well-documented, well-reasoned comments on the makeup of this committee.)
    Last edited: Dec 3, 2013
    snowathlete, Esther12, beaker and 4 others like this.
  2. Ember

    Ember Senior Member

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    47% :grumpy:
    Liz Willow and justinreilly like this.
  3. Iquitos

    Iquitos Senior Member

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    Four of them, including the chair, are already members of IoM, plus a psychiatrist, plus Bateman, who has been a CAA supporter -- 6 out of 15 -- enough members to make the process hell on those who care about real research and a non-psychobabble criteria/name.

    It's still true that this "work" does not need to be done; it's already been done.

    It's still a waste of 18 months and $1 million while bona fide research can't get funded.

    All this means is that they have learned to roll over us more carefully than they did last time.
    leela, beaker, rosie26 and 3 others like this.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    On the positive side, this is better than I expected and this is a consensus committee so having a majority isn't as crucial as in a voting situation. so at least we aren't being raped as badly as they are raping the GW vets, yet.

    On the other hand, the panel is still totally unacceptable. This needs to be all ME experts, which is not possible according to IoM rules. I don't think it's a coincidence that there is an expert on (cancer) symptoms, as opposed to signs, on there. Plus we have a chair who is an expert in the law of genetics and a panelist who is an expert in Latina psychiatry. 'Nuff said.

    I look forward to the report from Jennie and friends. Thanks to them for taking this on.

    I commented that of the doctors at the mt. Sinai conference, only Klimas had received an invitation. She expressed surprise that none of the others had. I was taken aback by this denial mindset. Obviously, they are never going to pick the likes of Enlander, Peterson or Mikovits who are top experts and tell it like it is, ie they tell the truth. I predicted they would also pick Bateman since she is another CAA/CDC fatigue favorite who can be relied on to not stand up to their lies.
    Last edited by a moderator: Dec 3, 2013
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  5. Ember

    Ember Senior Member

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    Date rape?
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  6. Iquitos

    Iquitos Senior Member

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    No, stranger rape. We didn't ask to go anywhere near IoM, let alone go out with them.
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  7. Sparrow

    Sparrow Senior Member

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    Benjamin Natelson seems to be a proponent of slowly increased exercise. Anyone read his book or worked with him and know how skewed his view on this is? Does he emphasize crash avoidance, etc.?
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That said, I know Jennie's unparalleled sleuthing/lawyering abilities will ferret out those hidden conflicts of interest that we know we there! As you will probably remember from the latest GW panel, there were important undisclosed conflicts including the chair being a director of UnitedHealth, the biggest publicly traded insurer in the US, 17th on the Fortune 500!
    snowathlete, Iquitos and Izola like this.
  9. Nielk

    Nielk

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    Queens, NY
  10. Nielk

    Nielk

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    If anyone can uncover things, it is Jennie.
    beaker, Izola, jspotila and 2 others like this.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Don't know, but Natelson really downplays the immunity aspect and therefor disagrees pretty sharply with Klimas. This is great for HHS' classic "no one really knows what this is since there are no consistent findings" BS.
    Iquitos and beaker like this.
  12. Bob

    Bob

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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Fwiw, I look forward to Jennie and friends' report because of her unparalleled detective work and lawyerly arguments and abilities. She is an extremely dedicated, bright and well educated advocate, more so than I am, imo. Honestly not trying to be a jerk, though it may seem that way. I do really admire and respect her and her work.
    waiting, leela, Izola and 2 others like this.
  14. akrasia

    akrasia Senior Member

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    Hiillary Johnson wrote:

    IOM "provisional" committee. Thumbs up Martin Lerner, Besty Keller, Lily Chu, Peter Rowe, Nancy Klimas. Huge thumbs down: Margarita Alegria


    I agree and would add Ron Davis to the positives. Davis is a geneticist, affiliated with Stanford and the Open Medicine Institute. It's my understanding that he has a child who is severely ill with m.e.

    Klimas and Lerner were both authors of the Canadian Consensus definition.

    I certainly think the CDC is backing away from Fukuda, not remotely fast enough but that is what seems to be happening. The latest installment of this came yesterday at the dedication of the Griffiths University, which coincided with a research paper whose results, which need duplication of course, affirming the utility of the International Consensus definition. Unger must have known this was going to appear while she was there.

    Is there a split between the CDC and NIH on this matter. Perhaps. But the NIH has given 1.5 million dollars to the School of Tropical Diseases in London to establish a biobank, using the Canadian Consensus and 94 Fukuda.

    http://www.lshtm.ac.uk/itd/crd/research/cure-me/ourvalues/index.html

    On the other hand they run the CFSAC in such a disingenuous, inept way that undermines their credibility.

    Why do we always have to read the runes...
    Last edited: Dec 3, 2013
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It was a big institution, white male (in a trench coat or lab coat) that jumped out of the bushes and had its way with us then took our wallet with food stamps and $1M cash and left us for dead.
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  16. alex3619

    alex3619 Senior Member

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    Lerner is a pleasant surprise. Only one psychiatrist? That is a plus. I have only just started looking at this though, I may say more later.

    It would be surprising were there not one psychiatrist. I think this is as good as we can expect.

    [My bolding.]

    I think this answers my question about what kind of evidence-based approach is likely to be present. So my focus is now moving to the Cochrane guidelines.


    She is exactly who we need to properly evaluate the 2 day CPET evidence.

    Shelanski is a biochemist (or cell biologist or similar) and pathological neurology researcher. For someone independent of ME, fulfilling the 25% rule, he is probably not a bad choice.

    Ganiats is a potential Finagle factor. There is no way to even vaguely assess what impact he might have based on a brief bio. He could be exactly what is needed, or exactly what we don't need. We may benefit from deeper analysis in this.

    Let me stress again though that the rules of evidence can bias a review far more than the choice of researchers. It depends how much independence they have while still claiming to be evidence-based.

    I am a fan of the principle of evidence-based medicine, but not how its typically done. Practice does not live up to the theory, especially in psychiatry.

    I will not comment on the rest for now, some of whom are well known to us, except to say that there seems to be a trend to those interested in cancer and autoimmune, which might lend some extra expertise to interpreting the Rituximab data.
    Last edited: Dec 3, 2013
  17. Esther12

    Esther12 Senior Member

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    Speaking from real ignorance: Looks much better than I feared. To me, it looks like there are enough people on the side of patients there, that this is unlikely to end in real disaster, as a truly terrible criteria would lead to walk-outs, controversy that the rest of the panel would be keen to avoid.

    I was always a bit unusual with my concerns about this, but I think that I'm probably more concerned about there being too many CFS experts than not enough. I still do not expect this process to lead to something good for CFS patients, but think it's less likely to be terrible.
  18. alex3619

    alex3619 Senior Member

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    This is certainly better than the worst case scenario, and probably not too far from the best we could expect from the IOM. That is of course the question for now: what exactly would the highest standard review from the IOM look like? The only examples we have so far are damning. I can only hope that the current selection can really keep things under discussion properly focused on science.

    One thing we do have to stress is how much evidence there is against psychogenic views, and how flawed that research is. However some on this panel are well aware of that, so that is a big plus.
  19. WillowJ

    WillowJ Senior Member

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    Looks like the sort of person we would like to be interested in ME. Still not convinced a definition committee on a tight deadline is the place to start them off, but this person is studying interesting and related things. Appears to be strictly a cell biologist (and what @alex3619 said).

    Put him in a room with Lily Chu, Peter Rowe, Nancy Klimas, and A Martin Lerner and his prospects are good. It would be even better if @Jonathan Edwards, Derek Enlander, John Chia, and some others were available to him.

    Disclaimer: So far, I have searched nowhere other than PubMed
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  20. akrasia

    akrasia Senior Member

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    @WillowJ

    And urge him to have a cup of coffee with Mady Hornig and Ian Lipkin. who are his colleagues at Columbia.

    It's hard to believe but this might work.
    usedtobeperkytina and WillowJ like this.

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