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IOM Bias: "The Cause(s) of Chronic Multisymptom Illnesses Following the First Gulf War"

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ren, Nov 14, 2013.

  1. alex3619

    alex3619 Senior Member

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  2. Ecoclimber

    Ecoclimber Senior Member

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    Alex,
    During my research of the IOM awhile back, I came across while purusing hundreds of documents, an archive IOM document on their site, that stated the purpose or policy of the IOM was to shift current and future medicine from symptom based criteria to an evidence base criteria outlining and disclosing their meaning behind EBC. Their stated objective was to align the policies of the health, medical and disability industry with government policy by reshaping both to conform with EBC as a way to increase efficiency and to reduce costs. This document was created years ago and unfortunately, I did not save it or bookmark it at the time as I was concentrating on GWV documents. Perhaps, you maybe able to find it?
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  3. alex3619

    alex3619 Senior Member

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    @Ecoclimber I haven't looked for this yet but there are plenty of places where an evidence based approach is mentioned, so its possible to infer what you said anyway. In any case I have been treating everything to do with the IOM as though this is the case until they prove otherwise.
  4. Ecoclimber

    Ecoclimber Senior Member

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    As a side note which I stumbled across, Affordable Care Act of 2010, Title IV. Prevention of Chronic Disease and Improving Public Health. (b) CONSULTATION.—In coordinating the campaign under subsection
    (a), the Secretary shall consult with the Institute of Medicine
    to provide ongoing advice on evidence-based scientific information
    for policy, program development, and evaluation.
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  5. alex3619

    alex3619 Senior Member

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    The medical insurance industry especially HMOs. have been pushing this for decades. Maggie Thatcher started a lot of this, then we had NICE. EBM is being pushed from multiple sources, and a huge one is medical management with a focus to contain costs. Its not surprising that a major public health measure like the Affordable Care Act has this clause. It is however a problem in that the processes the IOM are using for things like this are still under development.

    The emphasis on EBM has good intentions in its broadest sense. The sense in which medical treatment is limited to only some things and not others, based only on EBM, is a huge problem. In theory doctors still have independence, as EBM guidelines are only advisory, however in practice these guidelines are coming to be treated as hard rules. HMOs certainly treat guidelines that way.

    In organizations with a primary focus of making money, whether that is a private hospital or government looking to minimize its profile, or an HMO, they will naturally want to use such guidelines. Further there have been moves going back at least a decade to provide legal protections and avoid lawsuits, at least in some countries including Australia and England.

    What this means is that there may be a degree of support for the IOM position from the Democrats and the Obama administration. This isn't a surprise to some, but I think it is in part an unintended consequence, and further that they may be vulnerable on this point. However the typical response is to go defensive, and we see an example of this in the Conservative coalition in the UK over ATOS/DWP.

    In the UK they deny, and defuse, and point the blame elsewhere. They publish invalid statistics as well. I am not convinced this will be as easy to do in the US as the UK has much less transparency than the US, though that is changing fast.
    Last edited: Dec 11, 2013
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  6. Izola

    Izola Senior Member

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    I don't get the first one. Its all Fakuda'd up.

    The CCC and the ICC are understandable. The ICC made consessions to the CDC which may be a bit confusing but less so when its understood the experts were "playing nice." Many people just don't want to understand us.

    That didn't work so they got focused and dropped the dangerous "6 month" criteria which horribly endangers our health. They said M.E. and listed the things to look out for. There's a lot of chatty in those criteria. They needed to explain what they were doing and why.All they need to do is tighten it up a bit. That they offered to do. The IOO and CCC were massive undertakings and I applaud them.

    I can't take in a lot of information at once so I break it down and go for the meaty parts. The CCC and more so the ICC basically say these are the perameters within which we think M.E. resides based on our science and observations of thousands of patients. With that as a guide one can narrow down their research cohorts and patients with a much greater reliability that they are all cursed with the same illness. How difficult can that be?

    If a doctor went to medical school they can understand the CCC and the ICC. Generally, I believe, clinicians just don't like to read anything longer than a paragraph Doctors aren't writers, but I've read tons of medical reports and these guys are the best.

    Who was it from DHHS (DHS) who said doctors wouldn't understand the CCC or ICC. That's just slime.
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  7. Izola

    Izola Senior Member

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    Advice, not policy. Dang. What were they thinking?
  8. Izola

    Izola Senior Member

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    One would think that in a democracy with our constitution there should be,
  9. Izola

    Izola Senior Member

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    I, for one, am not sure.
  10. Izola

    Izola Senior Member

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    advice
  11. Nielk

    Nielk

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    Exactly! Advice, as opposed to implementing policy which will determine patient care......or lack thereof.
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  12. Ecoclimber

    Ecoclimber Senior Member

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    Alex may know. It is a closed process. They rejected the GWV RAC scientific data but this is a different panel and one must go over the rules but then the contract has not been released. All we have to go on is GWV
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  13. alex3619

    alex3619 Senior Member

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    IOM for advice .. .hey isn't that what CFSAC does and they nearly completely ignore CFSAC?
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  14. alex3619

    alex3619 Senior Member

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    There is a stage for submissions from the public I believe. It isn't easy to properly rate papers though, and we don't yet know which of the guidelines the IOM panel will use. For one thing there are no guidelines I can find for disease definition reviews. They do not appear to exist. The IOM is making this up as it goes along, apparently.

    So the evidentiary basis for rating papers this way is unknown. Do we treat this like a diagnostic review? Those rules apply to lab tests! How about treatments? Those are not diagnoses, or substantive definitional evidence, so even an RCT has minimal value.

    Shall we allow in psychosomatic papers? The IOM SOW suggests that we should. If so how do we rate them? They do have RCTs but they are not double blinded. The patient cohorts are typically highly heterogeneous. They use subjective evidence except in a minority of cases. The 6MWT test in pace was objective, but it also showed very poor results. Almost (?) every other paper using objective measures has shown either no long term improvement or a worse outcome, including at least one review that was larger than the PACE trial.

    How about the underlying theory behind PACE? It cannot be substantiated, nor tested, and as a result its nonscience. Does that deserve an EBM ranking? Keep in mind EBM includes economic and subjective data guidelines! Is this science? Clearly not.

    EBM is not science, its management. I have already contacted one person in the Cochrane Collaboration with no useful reply. Maybe its time I cast a wider net.
    Last edited: Dec 13, 2013
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  15. lnester7

    lnester7 Seven

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    These are all so good questions (Scary too!) so maybe we can make an interview later to the panel patient rep (Lilly I think) so we can help gather and rate better. If we understand all these questions maybe we can be more efficient.
    (KUDOS to you for formulating them so well).

    I wonder if we can start a thread to start putting together the most obvious ones (like rituximab) and ones that have had duplication. So later all all we have to to left is categorized and classify.

    The ones that cannot be tested (PACE) we can do an explanation of the fault of the study. And gather the testimony of people that have been harmed by it, maybe a letter per person attached to the study?!?!??
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  16. Izola

    Izola Senior Member

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    Sorry to be dense. What's an EBM?
  17. Izola

    Izola Senior Member

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    Maybe another thread to drop in the collection of stuff about and supporting the legal issues. I have a problem with my fingers so handwriting more than a small list I'll lose anyway is not a good option for me. Iz
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  18. alex3619

    alex3619 Senior Member

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    EBM = Evidence Based Medicine

    I think its more like Evidence Based Medical Management, though this would be considered controversial.

    There are no bad questions unless questioning is used to harass. There are only bad answers. Questions make the world go round. ;) Without questions there is no progress, only dogma ... its why purely empirical science went out in the twentieth century except in, apparently, psychiatry and Evidence Based Medicine. To be fare though the purely empirical stuff in EBM is mostly from unquestioned psychiatric diagnoses, which in psychogenic diagnoses almost universally lack sound evidence, just accumulation of opinion.

    PS I forget acronyms regularly, yet even knowing this I forget to spell out what an acronym stands for regularly. Welcome to the ME brain. :bang-head:
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  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    There is no cite for the below, but maybe contacting the authors they could point you to something, then again, maybe not.

    "EBM also defines ‘‘highest quality’’ forms of evidence for other areas of medicine such as diagnosis (comparison with a known gold standard)…"

    http://skynet.ohsu.edu/~hersh/ijmi-04-ebm.pdf
  20. alex3619

    alex3619 Senior Member

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    There is lots on diagnostic tests. If we can get such a test then a lot of the EBM stuff may work for us rather than against us. A disease definition review, especially one for which no official diagnostic tests exist, is a very different issue.
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