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CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 6, 2012.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Sasha,
    I think Cort was saying That it would be too early for the CFI Lipkin study which I believe is the one looking for novel pathogens in ME. The Lipkin HGRV/XMRV study is overdue, yes and they keep saying it'll be out in a few more weeks or months and then it gets delayed again.
     
    Sasha likes this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Sasha,
    I think Cort was saying That it would be too early for the CFI Lipkin study which I believe is the one looking for novel pathogens in ME. The Lipkin HGRV/XMRV study is overdue, yes and they keep saying it'll be out in a few more weeks or months and then it gets delayed again.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Gracie,

    I agree on all your points.

    In particular, I wouldn't care about the name "CFS" if it didn't cause and compound so many problems, so I don't think it's nit picking. And I wouldn't care what they called it either if they were going to do bona fide science to figure it out, but they're not, that's their whole plan, not just an accident.

    So to make them do bona fide science and to get some measure of relief from the every day abuse, changing the name (ME is the best candidate now) is critical, and it is something we can do right now ourselves at no cost.

    What else can we do that takes no effort or money that will lead to better understanding, science and treatment?
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jimells, that last part was in response to you.
     
  5. jimells

    jimells Senior Member

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    I still see physician intake forms that list "nervous breakdown" -- what the H does that mean, anyway? Is that in the DSM?:mad:
     
  6. alex3619

    alex3619 Senior Member

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    Nervous breakdown is an old term - I am not sure what it really means either. Just more babble I think - this patient can't cope, lets call that a nervous breakdown. The question is, can't cope with what?
     
    xrayspex likes this.
  7. maverick76

    maverick76

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    St. Louis
    He probably died peacefully in his sleep.
     
  8. richvank

    richvank Senior Member

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    Hi, Cort.

    I agree with you on this point.

    For what it's worth, the GD-MCB hypothesis grew out of interactions in the internet groups with people who actually have ME/CFS, starting with detailed questionnaires about their histories to figure out what the causes are, and constantly coming back to their symptoms to see if these could be explained by the proposed biochemical model for the pathophysiology.

    This effort resulted in proposing that there is a variety of root causes, but that there is a common core to the pathophysiology. The common core is what makes it an identifiable disorder, and the variety of causes matches what is found in this population.

    The thing that pulls these two disparate-seeming concepts together is the body's known nonspecific response mechanisms to the whole variety of stressors (a la Hans Selye), and the fact that they all end up placing demands on glutathione and producing the same chronic vicious circle mechanism.

    In a situation as amorphous as this one is, a "germ's-eye view" is more productive than an overflight.

    Best regards,

    Rich
     
  9. Ember

    Ember Senior Member

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    Dr. Reeves had another option, Cort, and so does Dr. Unger. Shortly after the Canadian government allowed a panel of experts to base their criteria on consensus clinical opinion, Dr. Reeves chose instead to operationalize the Fukuda definition. Recently Dr. Levine suggested that CFSAC should consider developing an international, consensus-based, clinical case definition. Dr. Rose added that starting with the CCC, which already separates ME from depression, would enable us to start getting some meaningful research.

    For the CDC to insist on its “data driven” process is for the CDC to maintain its control, instead of allowing clinicians to bring their own data and expertise to bear. The CDC is asking clinicians to provide CFS data, but it is not allowing them to specify which case definition they've used. CFS is defined in the US by Reeves (2005) and Fukuda (1994). So if the CDC asks for 400 CFS patients, then that's likely what they'll get. Their data will be driven by their question. Subsequent to Dr. Fletcher's telling the CDC that Dr. Klimas uses the CCC to identify her patients, the CDC gave notice of a follow-on sole-source contract that apparently excludes her.

    According to Dr. Unger, “The question being asked over and over is, how do the patients differ in people’s practices.... Is that why the findings in the laboratory are not always translatable?” To answer that question, the CDC plans to define the heterogeneous syndrome that it calls CFS by first gathering data on pre-existing domains and then utilizing unspecified instruments (subject to there being any good ones) to establish severity cut-offs. Reeves et al. (2005) similarly used specific cut-off values on the SF-36, MFI and Symptom Inventory to operationalize Fukuda and identified groups (CFS, ISF and Not Ill) by severity, using cluster analysis. Consistent with Dr. Unger's question, Reeves et al. (2005) purports to “help to clarify the extent to which patients from different referral clinics are similar (or dissimilar).”

    Dr. Unger has embraced both Dr. Reeves' methodology and his goals. But she hasn't committed to any methodology for identifying subsets. Fukuda et al. (1994) states, “The central issue in chronic fatigue syndrome research is whether the chronic fatigue syndrome or any subset of it is a pathologically discrete entity, as opposed to a debilitating but nonspecific condition shared by many different entities.” Without committing to a test-retest protocol, how will Dr. Unger address this question?” She writes, “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.” Will Dr. Unger measure PENE and the associated neurological, immune and energy metabolism/transport symptom clusters of ME?

    Fukuda et al. (1994) also states, “We support changing the name when more is known about the underlying pathophysiologic process or processes associated with the chronic fatigue syndrome and chronic fatigue.” The ICC incorporates what is known about the underlying pathophysiology of ME. Will Dr. Unger's definition do the same?
     
  10. biophile

    biophile Places I'd rather be.

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    So it took the CDC about 25 years to start collecting standardized data on the clinical experiences of physicians and ME/CFS patients? Maybe we should take 25 years to pay our taxes.
     
    currer, justinreilly and WillowJ like this.
  11. Lisa Simpson

    Lisa Simpson

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    No amount of paltry achievements can make up for the harm this man did. He purposefully and determinedly stymied meaningful research into what he undoubtedly knew was a serious disease. Millions of lives have been lost one way or another as a result of his actions. He achieved nothing of note in his long tenure, he helped no one. The harm he did is incalculable. That's the truth of it.
     

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