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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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big new post from Hillary Johnson

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Eric Johnson from I&I, Jul 6, 2010.

  1. ixchelkali

    ixchelkali Senior Member

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    Oh, thank goodness, it's not just me. I went over everything on that page and couldn't find it. I was afraid I was losing my mind, or the brain fog was really thick.
  2. cfs since 1998

    cfs since 1998 *****

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    Anthony Fauci and Fracis Collins, she said.
  3. So is the Alter paper dead?
  4. VillageLife

    VillageLife Senior Member

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    ok, I saved the whole of Hilary Johnsons article before it was removed, not sure if im aloud to post this up here ?

    Maybe send me a private message if you would really like to see it.
  5. jspotila

    jspotila Senior Member

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    I think that is speculation at this point, not confirmed.
  6. Rivotril

    Rivotril Senior Member

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    i missed something I guess

    - first alter paper was ready for publication and they confirmed Lombardi findings
    - then papers were on hold cause of cdc didnt find anything
    - then cdc was published and alter was going to do additional research to be absolutely sure, what could take some months

    and i missed the hillary news but why could the paper be dead now? i mean the Alter findings are real and peer reviewed so how would it be possible to drop this paper? nobody could come away with that ?
  7. jeffrez

    jeffrez Senior Member

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    Of course the CDCers think they're right. Those kind of smug and arrogant faux "scientists" always think they are right about everything, that they always have been (except when they weren't - then they are self-congratulatory that they changed their view), and that they always will be. They will maintain denial of XMRV, or whatever turns out to be the biological cause/s of CFS, until the very last possible moment - until their very last breath in some cases, undoubtedly - and then when it's no longer possible to maintain denial and still remain credible (i.e., and keep their job), they'll begrudgingly accept reality and then go on some other crusade to feel self-important about. And a stray few will probably just choose to live in denial the rest of their lives, like the global warming deniers. The cognitive dissonance of admitting they were wrong for their entire careers simply will be too great for them to accept anything else.
  8. katieann

    katieann

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    Merely my opinion:

    I think the DHHS CDC and NIH/FDA are making sure that Nothing is in consensus. I think they want both papers to be as far from each other in results as possible if:

    1) Reeves name is on the paper, and Reeves is now in Mental Health (Senior Advisor)
    2) If the papers are miles apart with cohorts, then the CDC can say 'see? We are right in that our CFS population DOES NOT have XMRV.' Then CFS and XMRV will be mutually exclusive since anyone that has a diagnosis (XMRV) by definition, cannot have CFS.
    3) Dr. ALter's paper would be published with again, miles apart results. With his positive results, both the CDC and the NIH/FDA are still both correct.
    4) Watch and see if the CFS department is moved into the mental health section of the CDC.
    5) Then let's see if a new working group in teh new and reemergiong infectious disease section is created with focus on XMRV.

    My editor is messed up here... so there is more to this on my blog at http://toadlily-gamer.blogspot.com/ "Boilerplating 101"

    With their CFS 'brand name' intact, and their motives purely proved by the 'science', they are at less risk for reputation and really nasty if not criminal activities.
  9. garcia

    garcia Aristocrat Extraordinaire

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    Great post Mr Kite.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I still can't get past the "they must have a neurological condition quote."

    Blows my mind.

    Tina
  11. katieann

    katieann

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    yep, and or they (The CDC) really don't care What XMRV does, as long as it follows their own CFS guidelines of: "If they have any other diagnosible illness, then they cannot have CFS."

    oops sorry Tina, I think you were not addressing my post.
  12. SeaShel

    SeaShel Senior Member

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    The post we're talking about on this thread is back up.

    Shelley
  13. jeffrez

    jeffrez Senior Member

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    That was a really good write-up. Someone needs to send this story to 60 Minutes!
  14. Scavo86

    Scavo86 Senior Member

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    England
    Can someone PM me the whole post by Hilary please, many thanks :)
  15. Wayne

    Wayne Senior Member

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    I can't seem to find it at the link in the first post on this thread. Could someone post a link, or copy and paste the article? Thanks much!
  16. ixchelkali

    ixchelkali Senior Member

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    If it was up, either it's gone again, or I still can't find it. This is strange.
  17. SeaShel

    SeaShel Senior Member

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    It's gone again, and I stupidly didn't copy it earlier.

    But Hillary does state on the website that she does not give permission to repost.

    Shelley
  18. kurt

    kurt Senior Member

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    I think Cort hit the nail on the head. This is the only scenario that makes sense to me as well, based on the information I hear from some inside contacts. They all think they are right. And they each have their reasons for believing that.
  19. anciendaze

    anciendaze Senior Member

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    While I disclaim any inside knowledge of the CDC group we keep discussing, I've seen this dysfunctional research group syndrome before. By themselves, the individuals involved may be sharper than I've given them credit for being. Put them together in a way which reinforces their defects, and they will act like self-defeating imbeciles. When people are genuinely unable to recognize major logical defects in a plan, you won't find an isolated example; there will be a pattern of repeated behavior.

    Go back to the study which produced the cohort used in the recent paper. Consider the possibility that the empirical definition may be devoid of meaning. Deduce consequences of this idea before you look at the data. Now, ask how those diagnostic criteria were validated. You find a short circuit in thinking. Now, look at the reported data. Do they show the stable characteristics of a well-defined category? Do they show evidence of reproducibility? Quite the contrary; they match the hypothetical characteristics deduced above.

    Now, consider the laboratory assay in the recent paper. Does the design, implementation and validation of the assay show the same abstract pattern of defects? Are the controls adjusted to the test rather than adjusting the test to meet external criteria? This is what happens in research if you get used to taking the easy way out.

    This is also characteristic of a kind of 'waterfall' paradigm of planning, design, implementation and testing beloved by administrators. Schedules and budgets are predicated on getting each stage right, perhaps with little arrows showing the intended direction of progress. Loops showing reverse movement when validation fails are simply omitted. When such a situation appears, throwing schedules and budgets off, the temptation to short circuit the loop by moving the goalposts is well nigh irresistible.

    This is where Cort's observation that the people involved believe they are right comes in. If they are unshaken in the belief they really know the true answers, fudging the means by which they find it may not greatly bother them. This is the path to perdition.

    A second characteristic here has to do with organizational politics. The phrase 'all politics is local' fits. People in large, unwieldy organizations spend the majority of the time fighting for funding, attempting to control other groups, or simply trying to avoid control. Disputes become highly personal fights over control. Any concerns beyond this narrow scope are likely to distract you at a critical moment when an adversary is watching. The view from on high, or from outside, or from some plateau of objective truth is irrelevant to day-to-day survival.

    You go from fighting to control people, money and equipment to controlling problem definitions, then testing definitions, controlling procedures, and so on, until controlling data from the objective world seems perfectly natural. At that point you are truly lost.
  20. Levi

    Levi Senior Member

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    Alternative strategy could explain things

    Nope. It all seems pretty logical to me. At this level of weirdness, the only answer that makes any sense to me is a deliberate strategy by people in power to provoke the CFS/ME community into rash deeds. This will expidite and enhance the entrenched medical communities' efforts to marginalize CFS patients to the point they will be excluded from contributing to the blood supply based on psychological reasons alone; "after all, many of them are taking dangerous experimental drugs, and they are threatening to infect everybody with illness. We can't trust them."

    Once the rules regarding blood donations are deployed to exclude CFS patients based on psychological reasons, the pressure is off the CDC as far as public health issues go. If Dr. Fauci is behind this, the picture becomes clearer and more focused. He hates CFS patients. They made his good friend Stephen Strauss' life a living hell. In his final years, he became obsessed that some unbalanced CFS patient would bring him to harm, and withdrew into a protective shell to avoid that eventuallity. Its payback time . . .

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