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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. Otis

    Otis SeƱor Mumbler

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    One tidbit from Hillary's blog

    Managed to grab this quote (before the blog disappeared again?) from someone from Mikovits' team regarding the CDC cohort selection.

    An (expletive) phone survey and a one-day clinical evaluation? They call us out on not giving a detailed clinical description, then they describe how they found these people through (expletive) Publishers Clearing House?

    That's about the size of it.
  2. ixchelkali

    ixchelkali Senior Member

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    I think you could very well be correct that the CDC believes they are right, but if so, I think it's a belief founded on a tightly-held prejudice: i.e., that CFS patients are crazy. That this isn't a physical illness. They went into this absolutely sure they wouldn't find XMRV in CFS patients, because they are absolutely sure that the symptoms are psychogenic. The problem is that prejudices aren't rational. People don't react rationally when prejudices are challenged. They distort facts to support their prejudiced beliefs, they pretzel reality, they will let themselves believe horribly convoluted distortions rather than abandon their prejudice. Scientists are not immune from this.

    I used to think that scientists were logical thinkers, but as I've had more experience and gotten to know a number of scientists (not to mention marrying one!), I've come to realize that logic and science are different processes. Scientists have illogical, irrational beliefs like anyone else, and if anything they are MORE blind to them, because they believe themselves to be above that.

    If you're too young to remember, you've probably read about and seen pictures of the reaction of white racists to the beginnings of the Black civil rights movement. I'm not saying the situations are analogous, just that it illustrates how rabidly people will defend a prejudice, and how hard it can be for them to view objectively evidence that challenges it.

    The CDC's actions don't have to make sense from a scientific point of view. They will see them as making sense, because they see them through a lens of prejudice. They only have to convince others that their actions make sense. Unfortunately for us, the CDC still has a great deal of credibility in medical and scientific circles. And they are generally speaking to a receptive audience, people who are willing to believe them, because it's easy to believe that CFS patients are crazy. The people they're talking to are mostly ignorant about CFS, don't know the history of the CDC's relation to the disease, don't know that they are dealing with bigots, and may have their own prejudiced beliefs about CFS patients.

    So it's possible that they still believe that XMRV is a chimera. Maybe they see their closely held beliefs being challenged, may even have some cracks in their own mental constructs, and are fighting a desperate last-ditch battle to avoid relinquishing their bigotry. The fight could get ugly.

    So, yes, they may feel very certain of their results. That doesn't mean their certainty is based in reality.
  3. alex3619

    alex3619 Senior Member

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    Hi ixchelkali,

    Just to bring this home, I recently had the reaction from an educated long-term CFS patient that he was flabergasted that there was any confirmation of the WPI findings. Even in our own community, we shouldn't discount the possibilty that many patients don't believe what is happening either. Scientists and bureaucrats with a vested interest in particularly points of view are going to be very hard to convince, even if the evidence keeps piling up as I suspect it will.

    This is why I have started an email campaign in Austrailia, and intend to keep pushing it as a test case. We need to get the message out there so loudly that they realize we aren't going to go away until the science is done and listened to. Where-ever you are in the world, I suggest you do the same, but try to keep responses rational and factual. I know its hard, I share the rage (yes, the R word, not the A word) about all of this, but rationality trumps rage in many ways and we need to use our rage to help us drive rational debate, and not try to rationalize our emotions.

    Email is not necessarily the best way however; if you have the resources then hard letters are a better choice because they are tangible. Emails, on the other hand, do leave an electronic trail. Keep it public, and we can all trace who knew what/when, and so know who to go after (legally or politically) if an XMRV pandemic is eventually established, and who to push to make sure that a proper response is carried forward. Of course, if you can physically meet with a target audience that might be even better than a letter campaign, but also more than many of us can physically handle.

    Bye
    Alex


  4. Why is Hillary up again down again with this post? The rest of the site is fine so I doubt a server issue.

    Legal threat? But you'd think it'd stay down unless she ammended something & they sent a second C&D
  5. garcia

    garcia Aristocrat Extraordinaire

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    She has made minor edits.
  6. Forbin

    Forbin Forbin

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    The motivation seems pretty simple to me. Ten months before the XMRV paper was published in Science, Dr. Reeves published these results...

    Results: CFS cases reported significantly higher levels of childhood trauma and psychopathology than controls. Exposure to childhood trauma was associated with 6-fold increased risk for CFS. Sexual abuse, emotional abuse and emotional neglect were most effective in discriminating CFS cases from controls. There was a graded relationship between exposure level and CFS risk.

    Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction
    Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves WC
    Archives of General Psychiatry 2009; Vol. 66 (1): 72-80.



    How can he square that with a retrovirus?
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    My sister has CFS, was diagnosed in late 80s. She now rejects any association with it. She moved from CFs to depression to now dysautonomia in her search. When I mention CFS and XMRV, she brushes it off and says she doesn't care until something is proved. She went through the EBV thing, and every claim afterward. I tried to tell her that much more is known now. But we don't get into more detail except how each of us are doing. It is like the label CFS did nothing for her but bring her frustration. So she doesn't want to go there again.

    Tina
  8. Scavo86

    Scavo86 Senior Member

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    PLEASE PLEASE PLEASE may anyone who made a copy of the post (before it went down) PM me it as I have potentially got a very prominent British journalist interested in the blood supply aspect of XMRV and wanted to point him in the direction of the post by Hilary by means of a bit of background as to what's happening Stateside. Could be great for all of us if someone could get in touch, many thanks :)
  9. dsdmom

    dsdmom Senior Member

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    Could someone PM be a copy as well? I read it before but didn't think it would come down so didn't copy it. I'm trying to get together an email to 60 minutes and would like to have another look at it.
    Thanks!
  10. Scavo86

    Scavo86 Senior Member

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    Thanks ever so much :) all recieved!!!
  11. jeffrez

    jeffrez Senior Member

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    Not trying to be a jerk, but I don't think it's particularly ethical to be passing around an article that the author obviously doesn't want public. Strictly speaking, it's usually not even ethical (or legal) when it is published because of copyright reasons. I know I wouldn't like to find people passing around something I wrote if I took it down for whatever reason/s. I would suggest just waiting for it to be reposted, and then linking people to the article. JMHO.
  12. ixchelkali

    ixchelkali Senior Member

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    Anciendaze, I think you have captured the dynamics very well. It was like that in a large bureaucracy-sized HMO where I worked as a systems analyst, before I got sick. How they love their process maps and arrows!

    I twice caught major grief from company vice presidents when I refused to fudge data on quality control metrics. Even the coworkers who respected my ethics thought I was a little crazy not to just go with the program.

    "Dysfunctional research group syndrome" describes it perfectly. Once that kind of culture takes hold, it's about as easy as kudzu to eradicate, and even more destructive.

    To me, your hypothesis seems more likely than a true conspiracy. A conspiracy of that magnitude would require greater organizational ability than I credit them with. A culture of incompetence makes more sense.
  13. xrayspex

    xrayspex Senior Member

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    Its not up now, i didn't get to see it yet, was travelling today not on puter.....
  14. pollycbr125

    pollycbr125 Senior Member

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    your absolutely right Hilary makes it absolutely clear the article is copyright and I think we should respect that. I am more worried why the post is down I have never known this with Hlarys blog
  15. Wayne

    Wayne Senior Member

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    I agree. Hillary is a prolific writer, and we can all be assured we will get her "most recent thoughts" when she's ready to publish them. I think a little patience is in order.
  16. ixchelkali

    ixchelkali Senior Member

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    Look quick, it's back up!
  17. For those that have read it before, is this it & how much has it changed?
  18. SOC

    SOC Moderator and Senior Member

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    Thanks ixchelkali, I caught it this time. :)
  19. Levi

    Levi Senior Member

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    Men who do things to goats . . .

    Its the same article, but its longer now. She punched up a lot of details and support for her comments. It reads better now. She also now soft-pedals the Dr. Fauci connection and says he's a decider "at least in part" to spiking of the Alter paper. She also now mentions that her employer is telling her to shut up about this particular subject.

    Being the cynical lawyer type, I have been trying to follow the money here. When it comes to Dr. Fauci, he's all about controlling large sums of money:

    http://www.aegis.com/news/wsj/2005/WJ051201.html

    What if, in all these megabuck expeditures by the NIH controlled by Fauci, research into bioterrorism/recombinant genetics/and or gene therapy accidently unleashed a new human retrovirus into the population? And the CDC knew about it after the fact and had even funded the research that went haywire?

    http://www.genetherapynet.com/viral-vectors/retroviruses.html

    Sure, its a far out conspiracy theory, but we are trying to explain the unexplainable here. Now we are talking cover-up and vast sums of liability, money and reputations at stake. Do you think China's initial attempt to cover-up SARS was weird? What if they had created that pathogen in a lab? How far would they have gone THEN to cover it up?

  20. gracenote

    gracenote All shall be well . . .

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    That is exactly what she is NOT saying.

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