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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. Esther12

    Esther12 Senior Member

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    If it was just a misunderstood rumor, then it was presented too authoritatively... but we can all do that, and it is a 'buzz' page!

    "A buzz can be a rapidly oscillating two-tone noise caused by vibration or other source, such as that produced by bees or wasps. It can also refer to a generally excited hubbub, or background noise — see for example marketing buzz."

    I'm sure there are all sorts of rumors about, and I want to hear them because I'm that tragically obsessed by the whole thing. Anything that's not a widely reported or officially released statement should be taken as a rumor or hint - but a lot of us are pretty hungry for them.

    The CDC are expected to be releasing information soon.
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Also, I have not been one to keep up with studies. But even without the XMRV studies, I have taken hope from the many studies that have come out in the last year for our illness, Light study, Klimas's study and more. And what is more, based on my reading of Osler's Web, I am shocked at the number of researchers doing studies and attending conferences. I don't think we patients are derided as much by researchers as we are government and clinicians. (Dutch and UK excepted.) If you look at some of these studies, you see a long list of names as authors. ink of all the people coming to speak aboout or learn about CFS at the conferences.

    I don't think the cog has been in researchers interested. The cog has been in funding and clinicians knowing and accepting the research. Don't worry, even without the XMRV thing, the ball was starting to roll downhill as even the CDC acknowledged many with CFS have metabolic disorder.

    Tina

    And at the conferences, think of how many conferences there have been. And th
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    And even

    And even if, as Baker said, the CDC claims or puts out the theory that CFSers are more susceptible to XMRV because of immune system dysfunction, then that means they admit we have an immune system disease.

    Tina
  4. awol

    awol *****

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    I also think the split between researchers and clinitians adds to the problem. The only REAL progress in this disease has been made or inspired by people with DIRECT contact with ME/CFS patients. Too few researchers bother with this, no matter how good their intentions.
  5. leaves

    leaves Senior Member

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    Lol :)
    well who knows... They may still come with something this week...
  6. Rrrr

    Rrrr Senior Member

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    Kurt told me that the CDC has scheduled a press conference June 11 about XMRV. Let's hope it is good news for us!
  7. Cort

    Cort Phoenix Rising Founder

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    It wasn't on the Buzz page - I looked for it because after all this I'm curious about what I wrote - and I couldn't find it :). It was from a post somewhere in the Forums where I passed on something I heard from Kurt. After all this I hope it turns out to be correct. :(

    In any case that study has been reported to be ready for months...it can't be long now.
  8. Robyn

    Robyn *****

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  9. alex3619

    alex3619 Senior Member

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    Hi DysautonomiaXMRV,

    I tend to agree with everything you said, altough I might be a little more cautious. However, the journal Science is not just the best place to publish ground breaking medical research, it is the best scientific journal in the world. Only the best of the best studies are published there - you will notice that nearly all of the detractors are published in very low grade publications, with very little peer review or quality control.

    Bye
    Alex
  10. julius

    julius Watchoo lookin' at?

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    Cort,

    It's in the May 27th installment on the Buzz page, "Dr. Huber / Dr. Mikovits Clash".

    The last two sentences are;
    "That CDC paper has not come out this week as expected - now we hear that a Press Release is being written and it will come out next week."

    It's still there.
  11. Robyn

    Robyn *****

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  12. julius

    julius Watchoo lookin' at?

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    RU sure? I just read it and it's all there. Unless I missed something the first time I read it. Was there more to it originally?
  13. Robyn

    Robyn *****

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  14. Cort

    Cort Phoenix Rising Founder

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    Thanks for finding it - I wrote it and I missed it. At least now I know what I wrote...:)

    Dr. Miller told me that the HIV guys at the CDC started testing samples the day after the paper came out - they're eager to find this thing...I imagine its thought of as guaranteed employment for them.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Cort, is this from a firsthand source? Does a correction need to be put up?

    Tina
  16. srmny

    srmny

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  17. kurt

    kurt Senior Member

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    clearing this up

    And as I have stated earlier, I have no idea of the content of the press release or the specifics of the study to be reported. All I know is there should be news in the next week or two from the CDC about XMRV in CFS. I have heard this from several sources.

    Anyway, I don't know if this rumored paper/press release is the same as what will be shared in the press conference June 11th, although I suspect it might be one part of that.
  18. jspotila

    jspotila Senior Member

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    Not a Press Conference

    I don't think the June 11th event is a press conference. It's a teleconference course that costs $154, and is intended for:
    So unless there is another event on June 11th, I think we should avoid referring to the teleconference as a press conference. Calling this a press conference might create higher expectations than is warranted.
  19. Adam

    Adam *****

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    Good point AWOL. I guess that is where WPI got their edge, by working from the bottom up in a lab attached to a clinic, working with us poor sods who are sick as opposed to be stuck in some ivory tower like Wessely and co theorising.

    I sometimes wonder if the psycho lobby ever stop for one second and think, hang on a minute, these patients don't seem to be getting any better...why might that be?
  20. V99

    V99 *****

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    They just don't ask the question.

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