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IOM's response to patients' concerns about panel selection

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Nov 12, 2013.

  1. Andrew

    Andrew Senior Member

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    I doubt that the IOM will use the same standard.
  2. WillowJ

    WillowJ Senior Member

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    we do need to figure that out
  3. Nielk

    Nielk

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    To have an idea of how IOM chooses their panel members for a study in defining diseases, one can look at the current panel for defining CMI (used to be GWI).
    http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49546

    How many members of that panel have actually seen, treated or done research on Gulf War Illness patient?
    For example, Drs. Fred Friedberg and Suzanne Vernon are on that panel.
    A few are current members of the IOM. Psychiatrists/psychologists make up more than a third of the panel. I can only find three members with any experience with GWI. Some have previously worked for the NIH and/or CDC.
  4. leela

    leela Slow But Hopeful

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    The contract needs to be cancelled, the CCC adopted (preferably ICC), and everything needs to move along now.
    It is entirely inappropriate for this shenanigans to be happening now.
    Spending one sixth of the pathetic "CFS" "budget" on a definition that has already been publicly accepted by 50 (pretty much all) of the top experts in the field is insulting and wasteful of time, money, and professional resources.

    The real experts have defined the illness and they need to get back to helping patients, and guiding those who don't know anything about it.
    Keela Too, WillowJ, Izola and 4 others like this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't know if you included Dr. Vernon in those with GWI experience. Her bio said:
    "She currently serves on the Congressionally Directed Medical Research Program Gulf War Illness Research Program integration panel."

    That's a mouthful.

    I bet the main reason they picked Vernon, is they liked her work as a co-author of the fake CDC Reeves Criteria for CFS.

    So, Three out of Sixteen panel members have done any prior work on GWI: 19% of the panel, less than the number of psychiatrists and psychologists. That's insane. And as others have said about other aspects of IoM GWI reports, what makes us think they will treat us any better? SInce the vets have more clout in Congress, I can only see us being treated the same or worse.

    "Some have previously worked for the NIH and/or CDC."

    For all their talk of independence from the sponsoring institution, they find a way to insure the HHS perspective is included in the panel.
    Izola and Nielk like this.
  6. Snowdrop

    Snowdrop Senior Member

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    Chilling and quite scary.

    Maybe we as a community should start thinking in terms of how we are going to respond to the inevitable. That is, get out ahead of this. We are so ill it's hard to respond to things immediately but maybe we should have contingencies in place for when the IOM comes out with the report that we can't help but expect from them.

    We should be pre-mobilized.
  7. alex3619

    alex3619 Senior Member

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    The first action along these lines is to scrutinize proposed panel members, due out next month I think. We can and should respond, but our time window is likely to be very short.
    Izola and Snowdrop like this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It will be 20 days.
  9. jspotila

    jspotila Senior Member

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    I've started assembling bio information on people who MIGHT be appointed. My goal is to get that info out on my blog within 36-48 hours of the announcement. That will give everyone a head start on responding in the 20 day window.
    Izola likes this.
  10. leela

    leela Slow But Hopeful

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    Has everyone given up on STOPPING this? It needs to not happen in the first place. We have two perfectly fine definitions
    formulated by experts.
  11. Nielk

    Nielk

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    We (many if us), are still fighting this full force. We need to stop it!
    taniaaust1, JohnnyD, Izola and 3 others like this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Whatever definition US HHS adopts or endorses or 'distributes' instantly becomes the default standard all over the globe- look at Fukuda for example. This is why the IoM MUST be stopped and CCC adopted. I am never giving up on this.

    I don't think it will cause the decades-long destruction that Fukuda and Oxford have, simply because our advocacy efforts are slowly growing, so this will shorten the time an IoM definition dominates the landscape. But if the IoM study is completed, I still think it will take years of hard advocacy to dislodge it from a dominant position. We need to stop this freight-train before it gains momentum.

    This is our big opportunity to really make a difference! Lets hang in there and keep up our momentum (health-permitting), we are gaining.
    Last edited: Nov 19, 2013
    JohnnyD, Izola, leela and 1 other person like this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Alex, here is an article of various critiques of EBM I found interesting. As you have mentioned before, (at least at the date of the article in 2004), there was no evidence (at least as defined by EBM) for EBM itself. It said that EBM supporters have admitted that, but some have responded that RCTs that would support EBM would all be either impossible or unethical.

    So, EBM itself says there are very significant instances when it cannot and/or should not be applied, that it would even be unethical to apply it. This is one of those instances.

    From this article, it looks like many (most?) EBM supporters don't insist anymore that it is the be-all, end-all method for medicine, but that it is an important tool to be integrated with clinical experience. It looks like they won't admit though that the EBM model itself should change at all, at least in the rankings of types of evidence. I guess they want their model itself unchanged, but are willing to concede that the EBM model should not trump or exclude clinical judgment and other sources of knowledge.

    The wikipedia article, at least, fwiw, states that the methodological validity of the individual studies does need to be considered.

    http://skynet.ohsu.edu/~hersh/ijmi-04-ebm.pdf
    alex3619 and leela like this.
  14. Izola

    Izola Senior Member

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    Is entropy like I'm feeling like now? I don't know whether I'm living or dying or have been removed from the game. I stand by Leela's comments millions of per cents. And there's a hole in the part of my brain that used to understand what entropy is. Like your explanations though. They have kick-- dumb pun intended. Izola on sleep deprivation
    rosie26 and justinreilly like this.
  15. alex3619

    alex3619 Senior Member

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    I don't think most of us have given up on stopping the IOM. I think we need to prepare additional fronts of battle, as it were. First, if the IOM proceeds to further stages we can start fighting each stage. Second, if we make sure they know we are going to fight them every single step, that sends a message.

    The odds of stopping the IOM are weak. However there is another issue. Many are looking at modifying the process, making it more friendly to us. While possible I don't think we will get far. Instead the next tactic is to make sure they demonstrably had every opportunity to get it right, and then we can show they failed.

    This is not a battle, its a war. We are going to lose some battles, but the war goes on. Unless the IOM somehow gets things right, something I think it very unlikely, then we need to make everyone aware the outcome is irrational, controversial, biased, and unacceptable to patients and our leading researchers.

    They need to be aware that if the IOM definition goes through, and it gets disseminated, we will be fighting them for as long as it takes, on several fronts. Those fronts are public relations, political, and scientific. In the end a definitive biomarker or a successful treatment/cure may be what breaks the back of bad definitions and hypotheses.
    Last edited: Nov 23, 2013
  16. Snowdrop

    Snowdrop Senior Member

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    I agree with the above assessment.

    We need to be fighting public perception as it is informed through mass media. Whenever an incorrect statement appears we need to as a group respond with calm and dignity but also with determination. If the large news outlets BBC, ABC, CBC, PBS etc put out info that supports a wrong view of ME it should be challenged by all of us.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, you have all the symptoms of entropy. ME is basically entropy on a stick, imo.
  18. Gemini

    Gemini Senior Member

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    JR, you might be interested in formulation of the MS diagnostic criteria. Good model, excellent documentation:

    Series of published MS Diagnostic Criteria each new one incorporating new MS research developments over time:

    Schumacher Criteria 1965
    Poser Criteria 1983
    McDonald Criteria 2001
    Revised McDonald 2005
    Revised revised McDonald 2010

    http://www.nationalmssociety.org/se...=diagnostic criteria&start=0&num=20&x=19&y=14

    This might interest you: composition of the 2001 McDonald Criteria International Committee of 16 members:

    15 of the 16 panel members (94% of the total committee) were MD neurologists, clinicians & researchers, who specialized in MS; and

    1 of the 16 panel members (6% of the total committee) was a PhD neuroscientist specializing in MS, VP of Research Programs at the National MS Society.

    All were MS experts.

    Medical specialty societies are frequently involved in the development of guidelines & criteria.

    Aside, one MD neurologist worked at NIH, NINDS, on MS research.
    Last edited: Nov 24, 2013
    Keela Too, Iquitos, WillowJ and 9 others like this.
  19. leela

    leela Slow But Hopeful

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    Multiple like button needed!
    Please someone send this to that Kate Meck asap. There is no more time or space for the kind of drivel disseminated in her
    response.
    Nielk likes this.
  20. lnester7

    lnester7 Seven

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    Ok the way to do it is now find the weakness (if they are republicans, find support from democrats, and the opposite if truth) Play the game. Visibility. Press of every move BEFORE is over.

    We need to have it in DEEP scrutiny so any miss-step is not as easy to buried. PRESS PRESS and more pRESS, find allies. We have to come from on top with everything we got.

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