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CDC to enter sole-source contract with OMI

Discussion in 'General ME/CFS News' started by Ember, Aug 2, 2012.

  1. Ember

    Ember Senior Member

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    https://www.fbo.gov/?s=opportunity&mode=form&id=aa17ceb922f2043d479fc659f4c8f808&tab=core&_cview=0

    Added: Jul 30, 2012 11:10 am
    Has Dr. Klimas failed to qualify? At the November CFSAC meeting, the CDC reported having:
    Slow progress was reported in June. At that CFSAC meeting, Eileen Holderman expressed surprise on learning that clinicians weren't being asked what definition they were currently using. The meeting was informed, as I recall, that Dr. Klimas was using the CCC.
    taniaaust1 likes this.
  2. Ember

    Ember Senior Member

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    The CDC has removed its link to the quotation that I posted (with emphasis added) at the end of June:
    Here's their current statement, now placed under Overview and Definition of CFS:
    Dr. Klimas was among their recent course developers and subject matter experts. Yet I have difficulty imagining that she vetted the statement, "This ME case definition extends the criieria to an extended number of subgroups...."
  3. Desdinova

    Desdinova Senior Member

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    Hum..... So the CDC has resumed playing games once again.
    taniaaust1 likes this.
  4. Ember

    Ember Senior Member

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    Is Dr. Unger following in Dr. Reeves' footsteps by shunning collaboration with scientists (such as Dr. Klimas) at academic research centres? David Tuller writes that Dr. Reeves' support among CFSAC members was further shredded by a CAA report in October 2008, stating that “the largest chunk of the program’s funding...went to a single private research organization...in sole-source or no-bid contracts....” David Tuller adds that “the financial accounting appeared to confirm a frequently heard complaint about the CDC and Dr. Reeves—that they were not taking full advantage of opportunities to collaborate with outside scientists at academic research centers.”
  5. Dolphin

    Dolphin Senior Member

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    Compared to what the CDC has done in the past, I think the CDC involving such a team is a much better option than most.
  6. Ember

    Ember Senior Member

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    Does preferring the outcome mean that we should wink at the process? Is it a mere slip of the tongue when the CDC refers to this contract as an acquisition? (I'm not familiar with correct legal language.) Are private institutions easier to control than academic research centres?

    David Tuller quotes Kim McCleary's testimony to CFSAC in October 2008:
    It's too soon to forget.
    ixchelkali likes this.
  7. Desdinova

    Desdinova Senior Member

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    I can't help but wonder if this will be a repeat of the past.

    http://www.cdc.gov/cfs/meetings/case_def_05_2000.html.
    Since Dr. Unger has emphasized that this review will be data driven. Not sure if I'm interpreting things right but it seems to me that all the data will be collected from the collaborating Doctors such as Dr. Klimas and interpreted by this company then the CDC will base their decisions upon that information.
  8. Ember

    Ember Senior Member

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    As I read the CDC intent, all the data will be collected through “a follow-on sole source contract with Open Medicine Institute (OMI).” According to the CDC statement last November, the OMI was comprised of A. Koglenik, D. Peterson, C. Lapp, L. Bateman, R. Podell, Pis. But here, they don't name the participants.

    As of June, the contractors weren't being asked to interpret the data. They weren't even being asked what definition they're currently using.

    Thanks for the link!
    taniaaust1 likes this.
  9. Ember

    Ember Senior Member

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    So far Dr. Unger stands by the Reeves et al. (2005) definition and “the estimate, based on the empiric criteria, that 4 million people in the U.S. have CFS.” David Tuller writes that “others outside the CDC dismissed the new numbers as absurdly inflated and argued that the empiric criteria, like the Oxford criteria but unlike the 2003 Canadian case definition, blurred and expanded rather than clarified the disease boundaries.”

    Blurring and expanding rather than clarifying disease boundaries seems to be something that Dr. Unger learned from Dr. Reeves. The ICC recommends that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.” But rather than separating ME from CFS as recommended by the ICC, the CDC now subsumes ME (ICC) under CFS and seems to be engineering its expansion as well with the statement, "This ME case definition extends the criieria to an extended number of subgroups...."

    In a nod to the NICE Guidelines perhaps, Dr. Unger writes of the “Canadian Consensus Criteria of CFS/ME (sic).” Her methodology for reviewing CFS (Fukua) presupposes that there is one disease, with differences being matters only of degree. Like Reeves et al. (2005), she relies on “introducing standardized questionnaires and measurement scales to assess levels of fatigue and functional impairment” in the context of already existing domains: “We are planning to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME (sic), the 1994 CFS definition and the newly proposed International ME definition.”

    Cort writes of Dr. Unger that:

    In resisting a narrower definition, Dr. Unger resists too the exercise challenge:
    .
    Here's Dr. Unger's more recent position on the best instruments to use:
    Tellingly, Dr. Unger describes the CDC's current case-definition process this way:
    I read here Dr. Unger's continued rejection of a test-retest protocol. I expect her new CDC definition to again blur and expand rather than clarify disease boundaries.
  10. Ember

    Ember Senior Member

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    This interview of Staci Stevens might theoretically inform Dr. Unger as her group looks at “all of the instruments and cutoffs used and how they affect who does and does not meet the definition of CFS:”



    “The hallmark of chronic fatigue syndrome is exercise intolerance, so studying it and understanding it and the consequences of post-exertional malaise is essential to understanding what's going on in the illness.”

    “[PEM] is a very objective marker, and the way that we employ testing is a two-day test paradigm, and the second-day test allows us to objectively measure those symptoms of post-exertional malaise that very few people actually believe exists.”

    “What's unique to CFS is the second day...they should be able to come back and do the exact same thing. The unique part is that, unlike heart disease patients, CFS patients can't reproduce the results.”
    GracieJ, taniaaust1 and silicon like this.
  11. taniaaust1

    taniaaust1 Senior Member

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    If OMI is just good ME/CFS experts such as those listed above. I have no issue at all at the following quote below as it then sounds all good. Who else would we want to be be doing such a thing then our experts in this illness and have them collecting clinical follow up info and data.
  12. Ember

    Ember Senior Member

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    Without implying any criticism of the OMI experts listed, I have two concerns with this CDC announcement. One is with their statement, “This requires that the contractor has the required expertise in diagnosis and management of CFS and the infrastructure for clinical research.... OMI is the only contractor who can meet the above requirements.” Dr. Klimas met these requirements before. Why not now?

    My other concern involves the CDC's troubling history of entered into sole-source contracts while failing to collaborate with academic research centres. Universities are able to preserve academic independence, and her university affiliation may be one of Dr. Klimas' strengths. Private institutions can be easier to control.
  13. taniaaust1

    taniaaust1 Senior Member

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    umm I missed that before.. That is a good question.. why isnt Dr Klimas meeting those requirements? Is it cause she was going to use the CCC definition.

    Can someone find out which definition those others have agreed to use in all this?
  14. Desdinova

    Desdinova Senior Member

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    To me this is inherently flawed to begin with. No one knows what definition is being used and by whom. I'm also puzzled by how you can review, improve and change your current definition by using the very guide line you want to change and improve to analyze and interpret the data that is collected?

    I'm also not 100% sure that I understand what "management of CFS " is? If that company is using the CDC's CFS definition then what passes for management of CFS? So lets review things, the CDC is looking to see if they need to improve there CFS definition by collecting data gathered in-part by using the the current definition and interpreting it by using the current definition. Does anyone else see an inherent flaw with there process of gathering data to drive the revision process.

    taniaaust1 and Ember like this.
  15. Ember

    Ember Senior Member

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    According to Dr. Belay, the clinicians aren't being asked to reveal what definition they've based their selections upon. Instead they're simply being asked, “What are the cases they would classify as having CFS.” CFS is already defined, of course, by Fukuda (1994) and by Reeves (2005), but the CDC nevertheless plans to find out how well the various case definitions fare in selecting these already preselected CFS patients.

    Upon “collecting as many parameters as possible that would allow us then to apply to those case definitions,” the CDC plans to use the core symptoms of the 400 selected CFS patients to create its “data-driven” redefinition. Dr. Unger hasn't decided what to call it yet.

    Faced with this horribly flawed research design, perhaps Dr. Klimas decided against any further involvement. As Dr. Fletcher pointed out in June to CFSAC members, “Reeves did a lot of damage when he and the CDC made that revision of the Fukuda that opened up the case definition to a whole lot of people with depression. And so we have to be really careful about this kind of thing. It could be very damaging.”
  16. taniaaust1

    taniaaust1 Senior Member

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    Calling the new definition Unger Disease would be better then calling it Chronic Fatigue Syndrome.

    Maybe if they give it a new name after each new person who redefines the illness..at least then we wouldnt be confused at what definations are being used. :p
  17. GracieJ

    GracieJ Senior Member

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    My thought exactly, tania. LOL Unger Disease... that would go over big.

    This reads circular, no doubt. Crazy-making all over again, defining something by a limited existing definition.

    Leaving Klimas out at first seems a glaring error, but definitely I wonder if she turned down the "opportunity."
  18. Desdinova

    Desdinova Senior Member

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    No good will come out of using a flawed definition for CFS/ME based upon flawed research and beliefs to create a new one. No good will come out of this when the one in charge of directing it is clinging to the Dogma of the Bio-psychosocial health model. Dr. Kilmas in the long run may come to consider herself lucky not to have been attached to this if it turns into the fiasco It looks to be already.

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