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CDC replication study delayed in order to prepare a press release?!

Discussion in 'XMRV Research and Replication Studies' started by awol, May 28, 2010.

  1. julius

    julius Watchoo lookin' at?

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    redo,

    There's probably not a press release. There were some crossed wires somewhere.
     
  2. omerbasket

    omerbasket Senior Member

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    Well, there were supposed to be results from the CDC in june, no? We are in june... Anyone knows when the results are supposed to be published?
     
  3. Rivotril

    Rivotril Senior Member

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    maybe something on 11th of june? the katz thing?
     
  4. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    The CDC don't care

    Cort spoke to the CDC press office about this the other day, but they told him absolutely zilch - hence not much point speculating what they're going to do next.

    They are a law unto themselves and will not be swayed or pressured by mere mortals like us ....... no matter how much our lives are being screwed up by their complacency.

    Clearly, they don't really care !! :(

    TGOP
     
  5. VillageLife

    VillageLife Senior Member

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    I was thinking I know Nancy Klimas said one positive paper was coming out! Well maybe that paper isn't the CDC paper maybe its the study Dr Batemans been doing, Dr bateman is also doing a webinar next month about XMRV.
     
  6. Francelle

    Francelle Senior Member

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    I've been away for awhile....so wondering what the upshot of this thread is!! What was the CDC's 'press release'? This thread seems to have stopped abruptly - what gives?
     
  7. awol

    awol *****

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    Francelle,

    The general consensus is that it was at best a mistake, and at worst a hoax to distract forum members from bickering in a time of no news. In any case there was no press release and was never going to be. We were misinformed.
     
  8. redo

    redo Senior Member

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    awol; do you know anything about how the progress is going with CDC's replication study? (not the PR but the study itself...).
     
  9. muffin

    muffin Senior Member

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    Bang the Drums

    So go ahead and email the head of the CDC at: ftdh@cdc.gov and ask him WHY this study is not out yet. Also, I have to hunt down the email for the director (Kathleen Sebellius) at DHHS and ask her WHY this study is not out yet. Game playing and butt covering I suspect.

    But email Freiden. He works for the American Taxpayer. Ask.
     
  10. Lynn

    Lynn Senior Member

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    Wrote to CDC

    I wrote him at ftdh@cdc.gov.

    Simple and to the point.

    Lynn
     
  11. julius

    julius Watchoo lookin' at?

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    Actually, it was more likely that the buzz was about the AABB donor recommendation (and the early mention of it by Katz). But somehow wires got crossed and the info we were all looking for on this thread turned out to be just the announcement of the Katz talk.

    It really doesn't make any sense to think that it was a hoax.
     
  12. jimbob

    jimbob ME/CFS84-XMRV+

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    I just e-mailed them also. I also threatened to drive the 6 hours there and sit outside with a sign and the local media to find out what they're doing about this national health threat!
     
  13. kurt

    kurt Senior Member

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    I can assure you this was not a hoax, it was an accidental leak. I never intended this information to go on to the forum, but when I mentioned what I had heard to Cort I forgot to mention it was not for release, and he passed it on. So it was an accidental release of information, from a credible source as well.

    There still is apparently a paper but those can be yanked at the last second, so who knows when or whether we will see that.

    This is possible, but not likely based on what I had heard. I believe they had something planned and backed off.

    Information has been released by one blogger to suggest there are conflicting XMRV studies in two separate government agencies. Maybe they have decided to take more time to work out why. Who knows.
     
  14. glenp

    glenp "and this too shall pass"

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    I just wrote too -- I also wrote about a week ago. Jimbo maybe requesting an appointment would help???

    glen
     
  15. VillageLife

    VillageLife Senior Member

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    I just wrote as well.
     
  16. muffin

    muffin Senior Member

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    Keep emailing the feds, congress and the cdc -- they work for you!

    I have told my husband that one day I will have had enough that I do run down to the CDC and make a God-awful scene of some sort. If we weren't so damn sick and disabled, it would be a good media pull if many of us sick sat down in front of the CDC with our signs.

    I know we are sick. I sleep much of the day. But we HAVE to do more about our disease. This disease will keep going on infecting more and more people -- and possibly your family members (remember, it has genes associated with it, per Dr. Kerr). So, we have to be creative and nail the CDC, Fed, Congress, the media and the public about what is really going on with this possibly deadly disease.

    Again - no more crying to eachother - MAKE THOSE THAT YOU PAY TO WORK FOR YOU DO THEIR JOB AFTER 30 WASTED YEARS. ftdh@cdc.gov
     
  17. Mark

    Mark Acting CEO

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    Questions, Questions...

    Kurt, several people have questioned whether it's a good thing to post leaks and rumours like these, and we've had lively debates on the subject before. I've generally said that anyone should be able to post them and we can make of them what we will, but of course it does leave one open to being used by disinformation and smear campaigns, and there's a danger that any link in that chain of leaks could unknowingly be used in that way.

    I've always said that my curiosity means that I would rather know more than less, but really the question only arises because of the lack of transparency in the first place. Ultimately my view is that details of taxpayer-funded research ought to be available to those taxpayers in such a transparent way - and I mean, in real time, as events unfold - that the question of leaks never arises because we should have the right to know all this information anyway. Most especially in the 'Land of the Free'...

    I've also said that I'm personally happy for leaks to appear because people can make up their own minds, based on the track record of those leaks, whether to believe the next one. But since this one didn't pan out, does that make you trust your sources less, and/or should it make us trust leaks like this less? That would seem to be the rational response. Has this incident undermined your confidence in your sources, or have you had an explanation for why this one didn't work out? I guess you are suggesting they "had something planned and backed off" ?

    I don't really understand how these things work, so perhaps my question here is naive. If government authorities (and indeed other researchers too) can decide which scientific research they wish to publish and which they do not, in secret, does that make a complete mockery of the supposedly neutral and objective nature of the scientific process? Does it undermine the whole basis for trust in Science to deliver us the truth? Or is that just my imagination?

    Is that a public blog? If so, could we have the link please? This would be massive news, even if it is just a leak at the moment.

    Because if there are conflicting studies then that is yet further evidence that the controversies and conflicting results over detection of XMRV in both prostate cancer and CFS are an unexpected complexity in the testing and the nature of what those tests mean. That in turn would mean that those who can find XMRV are at the least finding something that everyone else can't find, and it would pretty much rule out the most credible theory I've heard as to what may have been wrong with the WPI study - that they are all liars and they made the whole thing up to make money from a spurious test. (By the way, that theory isn't the least bit credible of course, it's just that I haven't heard a better one yet...).

    And of course it's crucial to note that even if it turns out that for some reason the WPI were detecting something else, and not XMRV, but something similar or related, then that news is equally massive and significant for us as if it were XMRV. The WPI would still have made a crucial breakthrough.

    Also, if those conflicting studies both concerned ME/CFS specifically, then that would imply that at least one of them found a significant level of XMRV in ME/CFS. If that were the case, then for some of us this would represent proof that the WPI were right. I think you've said before that the scientific debate won't be settled until there have been 4 or 5 studies confirming the findings, and perhaps also more such studies than there are negative studies, and that sounds right as far as what the wider scientific community will need in order to accept the evidence - but for many of us, a second confirming study would be more than enough given that many of us don't even need that in order to believe.

    I really can't understand why the CDC haven't released any information at all despite all the requests they must be getting. Is this normal practice, to keep the whole thing under wraps? Does this happen in the same way with other research on other conditions? One would have thought they could at the least put out a statement saying that there are conflicting results and explaining something of why they are waiting for further information.

    The only thing I can conclude from their silence, and the reluctance to release any information at all, is that the potential implications - which they haven't been able to rule out - are so enormous that they are afraid to release the information until they are both certain of the details and have taken necessary measures to manage the implications and the public reaction to the news. Which would kind of suggest that Dr Mikovits' dire warnings are rather less "hysterical" than has been suggested...
     
  18. free at last

    free at last Senior Member

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    It does make you think doesnt it, if they have found nothing you would expect them to be shouting that from the roof tops by now wouldnt they ? Because of the high infection figures in the science paper both cfs and healthy population, the implications must be frightening to them, for so many reasons.

    But judy Ms involvment with them suggests to me they have shot themselves in the foot, because any attempt at a coverup will now be more difficult because they know she will argue against there negative findings, and possibly attempt to prove it, is this one reason for the long silence possibly.

    Be warned do not trust any goverment agencies on this, damage control will be right at the top of the list of concerns with any statement they ( CDC ) or any other goverment health agency in the world will make/

    This is not parenoia, from what weve all seen for so many years im afraid its realistic. I think there in a pickle and dont know yet how to get out of it, but when they figure out how to, then expect a statement.

    But sorry folks if you all think they are coming to your recscue, you wait and see what the statement actually is, just for once i want this thread remembered, and my views on this logged.

    So in time you will see i was right, and not parenoid or a conspirecy nut. Just plain realistic thats all.

    They are going to find a way out, and i suspect its going to be something in the order of yes we have found it, But extensive testing is proving it does absolutley nothing at all to human health. or we have found it but the figures are much lower than the science paper, both in CFS and the healthy population, and theres no evidence it makes humans sick.

    The cats out of the bag now, a coverup in the normal sense is too late i feel. But it doesnt mean a coverup of sorts wont be attempted, i assure you its at the top of the list, Its damage control is there concern, of that im certain.

    Lets see if my crystal ball pans out shall we. and we will see who is parenoid or just plain crazy with views like mine. But you know what in my heart i so hope im wrong. Now that really would install hope and trust for the goverments of this world, But untill i see it and gladly throw away these views in the dustbin. where i so want to put them. I dont belive it
    Last words

    DAMAGE CONTROL
     
  19. rebecca1995

    rebecca1995 Apple, anyone?

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    Mark wrote:
    Mark, this may be a reference to journalist Mindy Kitei's two-part article, Blood Feud.
     
  20. glenp

    glenp "and this too shall pass"

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    Reply

    I got a generic reply, not worth posting

    glen
     

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