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BWG Phase Two Results - Webinar

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by jspotila, Dec 11, 2010.

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  1. jspotila Senior Member

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    The CFIDS Association will host a webinar on Friday, December 17th at 1pm EST during which Dr. Graham Simmons and Dr. Michael Busch will provide an update on Working Group, including results from Phase II. The Association believes the patient community should have the chance to hear the BWG report live, and so arranged this webinar because while the FDA Blood Products meeting is open to the public, it will not be webcast. You can register for this webinar here: https://www1.gotomeeting.com/register/985931313

    Here is the full description from the webinar page:

    jspotila, Dec 11, 2010
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  2. urbantravels disjecta membra

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    What a week next week is going to be.

    Thanks jspotila for the news and to the CAA for making this webinar available.
    urbantravels, Dec 11, 2010
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  3. Esther12 Senior Member

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    Thanks for that jspotila.

    Any sneaky hints about what we should expect? Do the WPI know the results yet? So eager...
    Esther12, Dec 11, 2010
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  4. jspotila Senior Member

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    WPI was one of the labs involved in testing the samples in Phase 2.
    jspotila, Dec 11, 2010
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  5. Esther12 Senior Member

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    I know. But wasn't it all blinded? I just wondered if the WPI had been told the results once everything had been unblinded.
    Esther12, Dec 11, 2010
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  6. jspotila Senior Member

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    Results will be presented at the BPAC meeting. That's what I know.
    jspotila, Dec 11, 2010
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  7. Cort Phoenix Rising Founder

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    I think but, of course, don't know, that Judy must know the results....which makes it interesting that she is branching out further - talking about XMRV's relationship with Lyme, atypical MS in about a month in Santa Rose....can one assume that whatever the news is, it is not bad? I think we could say that if she does know - then we don't have a disaster waiting for us....

    I do hope they have gotten to the bottom of something......maybe I'm a little bit jaded but I do leave open the possibility that they have found no contamination, no discerning sample preparation problems and therefore just aren't sure what is going on.....
    Cort, Dec 11, 2010
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  8. CBS I've had worse years.

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    Jennie,

    Thank you for posting this and thanks to the CAA for arranging/hosting this webinar. This is the type of information that the patient community needs.

    Hi Esther, Just a quick question/comment. When you ask if "it" (assuming that you are referring to phase 2 of the BWG study) was "blinded," are referring to the act of "blinding" the researcher to the patient/control status of samples they are testing until after they have analyzed the samples and declared them positive or negative? Or are you using the term "blinded' to refer to the conclusions of the second phase and the results of the other labs? The term "blinded" typically refers to the former.
    CBS, Dec 11, 2010
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  9. shannah Senior Member

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    Wonderful news!

    Now this is a service of value to our community.
    shannah, Dec 11, 2010
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  10. eric_s Senior Member

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    Yes, thanks CAA.
    eric_s, Dec 11, 2010
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  11. Esther12 Senior Member

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    Thanks again jspotila. I was just hoping you'd have some more insider knowledge.

    Yup. That's what I meant too. I'm not sure at what point the labs involved would have been told which samples were from CFS patients and which were from controls - maybe not yet?
    Esther12, Dec 11, 2010
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  12. Cort Phoenix Rising Founder

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    My take on the XMRV Buzz Page

    Cort, Dec 11, 2010
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  13. Jemal Senior Member

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    I am hopeful for some results. Maybe we are getting a nice Christmas present...
    Jemal, Dec 11, 2010
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  14. Otis Señor Mumbler

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    Just a bit more jaded

    Having established myself as 'slightly' more jaded, ;)

    In my mind at this point, the question is: "Do we still have to listen 'rumor contamination' any longer, or not"? Be specific or shut uppa you face.
    Otis, Dec 11, 2010
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  15. Hope123 Senior Member

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    I think that this broadcast will hopefully answer some questions. It think it's a good sign that Dennis Mangan just released recent info for the NIH conference this week; it's possible they found something that prompted them to set a concrete date for the conference although the conference (without a specific date) had been mentioned earlier during CFSAC without regard to the BWG results.
    Hope123, Dec 12, 2010
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  16. free at last Senior Member

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    Seems striking to me that Judy, is going to be talking about there positive uk study.If she has found out there was major problems uncovered during the phase 2 studys.Then that would seem a rather silly presentation from the outset.Either she doesnt know the conclusions of phase 2. or this indeed is a indication, everything is still on track. I cant help thinking even if she didnt know the conclusions of phase 2.Just to be playing it safe a positive uk 50 presentation would be the last thing she would be doing under those uncertain circumstances from her and the wpi.I think she knows. And i think its full steam ahead.Am i wrong to be assuming this ? Anyone
    free at last, Dec 12, 2010
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  17. Esther12 Senior Member

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    I think you're probably right... but as a note of caution: Judy and the WPI have always been very confident. It's not impossible that they don't know the results, but really don't think they could possibly be wrong about this. Even more unlikey - they could be pushing ahead even if the BWG results threw doubt on their work.
    Esther12, Dec 12, 2010
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  18. Cort Phoenix Rising Founder

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    That all makes sense to me :)
    Cort, Dec 13, 2010
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  19. Mark Moderation Team Lead

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    I'm getting so nervous about this now - it really seems to be set up as a make-or-break for us - but I have to recognise what Cort said: the evidence of how everything has unfolded so far suggests we're just as likely to get another inconclusive and confusing set of findings.

    Since the results are going to be public domain on Tuesday, I hope we won't have to wait until Friday for the headlines. One part of what's supposed to be coming this week seems fundamental: the WPI results. So long as they have decently consistent figures for their blinded tests, there should be nothing else to discuss: I want to see those numbers on Tuesday. And one part that troubles me is that the results I'm hoping to see on Tuesday ought to see the world's media beating down their doors that night...in which case Friday's webinar from the CAA would be rather redundant. Can we conclude from the existence of that webinar, 3 days after the news breaks, that whatever is about to be unveiled is not going to set the world alight?...

    I've made the point often enough, as have plenty of others, so I'll only briefly mention now that the lack of transparency from the BWG has lost the trust and respect of significant sections of the patient community, including myself, such that the group now lacks the authority to deliver a 'negative' result this week without spawning a thousand new conspiracy theories. We just have to hope that scenario isn't going to arise...

    Anyway, we shall soon see. I agree with all the points made above that suggest the WPI are still backing their findings, and I would add that it's inconceivable to me to imagine that the unblinding would all happen and be revealed to the participating groups, at the meeting itself, this week - surely the results must be known to the WPI by now? - and they don't seem to be slowing down. Surely the unblinding process would be only the start of the work needed before next Tuesday: they then need to present those results, and come to some interpretation as to their meaning. It seems to me that's probably what they've been doing for the last month.

    But I'm not making myself any less nervous here...could we be 'free at last' in 48 hours time? Whatever happens, I'm glad I'll have the Phoenix Rising community to share the moment with...
    Mark, Dec 13, 2010
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  20. Esther12 Senior Member

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    ?

    Are they? I missed that.

    As for a BWG negative spawning conspiracy theories... we'll have to wait and see. If the WPI accept the BWG's verdict, I don't think many patients will go on insisting otherwise. It sounds like stuff like the Singh study is ongoing anyway - I think we're going to get a pretty conclusive answer on this one.
    Esther12, Dec 13, 2010
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