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XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Nov 5, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Here's the latest from the XMRV Buzz - some news on the Singh study - guess what? - it's taking longer than expected :rolleyes::rolleyes::rolleyes: but it is a big, overlapping study - so maybe that is no surprise.

  2. August59

    August59 Daughters High School Graduation

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  3. Esther12

    Esther12 Senior Member

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    I wish the Singh stuff sounded more positive. Worry, worry, fret, fret.
  4. eric_s

    eric_s Senior Member

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    Yes, unbelievable they have not done this a long time ago. I think Dr. Enlander suggested it, but it never happened. Would not take very long, not be expensive and everybody could stop all that contamination talk.
  5. Cort

    Cort Phoenix Rising Founder

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    Things clearly are not clear yet unfortunately....
  6. eric_s

    eric_s Senior Member

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    I just don't get how things can not be clear after 8 months or so... Either you're finding something or not. And if you're finding something and you have unblinded the samples or done it with positive and negative controls you know wheter it means something or not. Of course this is much too simplistic, but i just can't believe the "we are not sure". Neither the "XMRV is it" nor the "it's all contamination" people took so long to come to a conclusion. Of course it's a good sign they are so thorough and want to really be sure, but i find it very hard to imagine an explanation for this. But this is true for the entire situation since last year...
  7. Navid

    Navid Senior Member

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    dr singh has my blood, which tested poz w/wpi...one of dr singh's lab asst's wrote me yesterday: that testing and research is taking longer than they had anticipated...it is more complicated than they first thought....i don't interpret that as meaning they are finding nothing but perhaps variations???? but that's my optimistic side speaking again : )
  8. Esther12

    Esther12 Senior Member

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    I think that with CFS research I always interpret an absence of good news as being probably bad news.

    Interesting to know that they're testing your blood when you've tested positive with the WPI. Did they know that when they selected you?

    I can't believe how long I've been desperate for news on this. I'm amazed that I've maintained this rapt attention for over a year now!
  9. Navid

    Navid Senior Member

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    it is a blinded study...but they are testing 100 known poz from across the US who have also been dx'd by a recognized cfids expert....so all poz really do have me/cfs...i guess the blinded part is that my name is not attached to the blood sample....dr singh nor the lab knows which samples are poz and which are neg....the negs are from healthies from the same regions of the country as us sickies.

    hope i explained this correctly but that is how i understand it.


    a number was assigned to my sample....when the testing all done they will coordinate the names and numbers and let us know our status thru her testing.
  10. Cort

    Cort Phoenix Rising Founder

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    I really have no idea. One idea I had was that they did unblind the samples and that not all the results correlated as much as Dr Singh wanted - that is the PCR results didn't quite fit with the antibody results...or with each other - maybe they were close but not close enough - which might not be that surprising since this is a new virus. In the original WPI study about half of the 15 samples, I think it was, tested postive for XMRV. I don't know what Dr. Singhs criteria are - maybe she wants a higher percentage. Just a guess.
  11. Cort

    Cort Phoenix Rising Founder

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    Did the lab asst write you because you asked her or are they just catching everybody up with what's going on?

    The fact that our Utah XMRV/MLV expert has found that it's more complicated than she thought it would be - means its pretty complicated...but what else is new?

    Maybe we shouldn't be surprised that this too is taking a bit longer than expected - that's the way its been from the beginning, really.
  12. Navid

    Navid Senior Member

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    hi:

    i wrote her first because i was originally told i shld hear result by mid Nov...and we me/cfs'ers are calendar watchers : )....so it was not an unsolicitated note.
  13. Cort

    Cort Phoenix Rising Founder

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    Well, that's not so bad....
  14. Otis

    Otis SeƱor Mumbler

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    Thanks Cort, but I'm no webmaster. The Google 'sites' tools make it pretty easy.
  15. akrasia

    akrasia Senior Member

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    I think whatever is going on here should be read in the light of Singh's recent meditation on methodology. It sounds as though she may end up with an explanation, accompanied by concrete examples, of why it's so difficult to find, even when you are in unimpeachably good faith.

    Simply put, I suppose she wants to nail down proof that positives are real, not a lab artifact, and show how false negatives happen. If she is proceeding this way, and who knows if she is, then her research would beat Lipkin to the punch on its claim for greatest explanatory value. That might be interesting and would be extremely satisfying on all kinds of different levels...
  16. Cort

    Cort Phoenix Rising Founder

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    I agree! (Akrasia and I agree again :D) I think she's trying to vault the field forward and her study may very well be a definitive one, and, of course it will be published long before Lipkin's is. Put it this way - if she can find XMRV using all her tests - I imagine her paper will be like the Science paper #2 - a landmark paper that helps to reorient the field. Whatever she finds will have a big impact on XMRV because she's looking at it from so many different angles.

    I almost think - how could it not take longer than expected?....There are some definite twists with XMRV otherwise it would have been found by now. Even the WPI readjusted their methods in midstream - they put out an altered methodology section five months or so into the process - so she's working and adjusting as she goes along as well.
  17. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    And if Singh comes up with results sooner than Lipkin, that is great news for patients. So far, she has been really good at communicating findings and results as she goes along. She was very happy to answer questions in her TWIV interview with Raccaniello too.

    Maybe this is simply the difference between the approach to public communications by privately funded, University conducted research bodies versus the approach taken by Government funded Federal research agencies.

    The bigger government bodies appear to operate in a disconnected and rarified sphere of their own. Consideration of the effects and results of their findings on patients like us further downstream seem to rarely enter into their picture.
  18. akrasia

    akrasia Senior Member

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    There is a very precious freedom embodied in the academic world, as long as it can remain free of the tentacles of "policy" and commercial interests.

    You are right, the world of the BWG has other considerations besides mere truth, although I'm sure they'd be apoplectic if I said this to them.

    Public perception, accountability, and the actual effects of research on civic and political life all come into play with research by government entities. At its best, academic work can be relatively free, as long, of course, as the participants have tenure and independent spirits, both of which I think Singh possesses.

    If there is a "problem" with academic research it's the problem that haunts much intellectual work in the sciences, unexamined assumptions and the inertia of received ideas. These cripple a lot of work and attitudes. Consider how badly people with M.E. have been treated in places like Harvard and Yale.

    But the distinction you are drawing is interesting and deserves more attention than I can give it at the moment.
  19. Cort

    Cort Phoenix Rising Founder

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    At the Reno Conference in 2009 - so long ago! - Dr. Mikovits told me she would have never, ever considered talking to the press when she was at the National Cancer Institute. It's just not done there - it sounded almost like a career killer. Obviously she feels much freer at the WPI and Dr. Singh does at the Univ of Utah to speak to the 'media'.
  20. Cort

    Cort Phoenix Rising Founder

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    From the latest XMRV Buzz page

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