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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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    From the latest Buzz:


  2. George

    George waitin' fer rabbits

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    Thanks for e-mailing the PTB's in regards to the Phase II study and reporting on the facts that the meeting did take place, Cort that was way cool of you. "The Sworn to Secrecy" is that like actual words from an actual person, no names obviously, (big grins) or just that everybody has become expert at dodging the "questions"?? (toothy smiles)

    To me the Phase II study is the BIG DEAL and I have been waiting on the edge of my seat. Phase II would show where folks went wrong and we could really get on with showing causality. The fact that everything is quite has my nerves stretched to the point of breaking. I'm probably going to have to move Tibet to get my stress levels down. I'm wondering if there is any correlation in the timing of taking the NIH (ME/)CFS web site down at "this" time and the information from the Phase II study.

    I know I'll live through this but I have to say that for the first time in a really really long time I WANT IT AND I WANT IT NOW!!!!!!!!!!!!!!

    (bright red grins)
  3. Gemini

    Gemini Senior Member

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    Thanks, Cort, his answer should be very interesting.
  4. Gemini

    Gemini Senior Member

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    Excellent point. WPI also used microarray panels to identify viruses in general in ME/CFS patients. This important work plus genetics and other ME/CFS research is summarized in a 36-page May 29, 2009 presentation:

    http://www.wpinstitute.org/news/docs/Invest_in_ME_20090529_Mikovits.pdf
  5. Cort

    Cort Phoenix Rising Founder

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    If they answer! Nothing yet so far. Not sure what Plan B is.

    All I know is that the meeting took place and the person who told me that it took place couldn't say anything else about it. I'm with George - I think this is the big hurdle and I want to know about it. It's weird!
  6. George

    George waitin' fer rabbits

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    Cort
    I'm a little "concerned" actually. The fact that we had to make a huge stink in order to get the Lo/Alter results released makes me feel like we may need to put pressure on the PTB's to release the Phase II results. It took the media asking questions before we got anywhere with that and I still feel like the results were slightly fiddled with in regards to wording.

    I don't think there is a cover up to get rid of the XMRV finding I just think there is this 'mule' like resistance of the DHHS to take the public plunge with this research. The quieter they can be the better for them. And the longer they can be quite the better they look to the public at large, if not to the smaller patient population, when they do have to release the information because they will have so many more answers to give.

    I'm thinking we may need to start a campaign of letters to all media outlets and see if we can get a tickle and if not just blog it, post it and clog up the facebook walls with it and see what happens.

    I hope that we don't have to go there and that the promises made will be kept and the NIH will be transparent in all of the aspects of this research but dang it, it just feels like we have to pull teeth to get these folks to say anything at all.
  7. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    As Mark and others have suggested they might be gearing up for publication and we will get our promised feedback then. I'm sure Lipkin won't have any difficulty getting published. Pretty sure they will want the scientists and federal bodies to be 'singing from the same hymn sheet' altogether this time (as opposed to last time when the patients knew about the results before almost anyone else, thanks to those intrepid dutch journalists!)

    Based on Megan's post from Lipkin's research guidelines above (points 1-7), it looks like its his style to bring everyone together and have them all working towards the same goal together to reach a consensus (rather than each institution trying to outdo each other for prestige/financial gain etc ie the CDC jumping the gun last summer and publishing before the NIH). With Lipkin orchestrating, they will look organised, coherent, professional and on top of the situation.
  8. George

    George waitin' fer rabbits

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    If we are waiting for Lipkin then we won't see the results till April. The promise was for transparency to the patient community each step of the way. The phase two results are about how to find virus in patient samples. By releasing that information they actually assure that negative study's, that show they have followed all the protocols, are negative. So if the CDC says hey no XMRV in our patients then we know they are telling the truth. (grins)

    Ya would think they would want that out there! Plus, "They" promised!
  9. VillageLife

    VillageLife Senior Member

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    Maybe christmas Eve.....we're get our answers!! :) (wouldnt that be nice)
  10. guest

    guest Guest

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    That would be a nice present.
  11. Sasha

    Sasha Fine, thank you

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    Is it still the Blood Working Group who are doing this? If so, would they publish in the normal manner for researchers (peer-reviewed journals) or just whack the info up on their website or wherever and hold a press conference? I'd be a bit surprised if this stuff went through peer review to end up in a journal rather than on a govt website, but I'm not familiar with this kind of stuff. It just seems more like an inter-govt-agency thing rather than a normal research collaboration of university researchers. How was the Phase I info released (sorry, no memory!)? Would that be a guide?

    Whether it is peer-reviewed or not influences timescale enormously, of course.
  12. Esther12

    Esther12 Senior Member

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    Needs to be sooner than x-mas!!

    I'm surprised that it's now looking like we wont get news from this meeting this week. I thought they were meant to be keeping us informed? Which patient groups were involved that are now keeping quiet? Presumably the WPI were involved, and if there was good evidence of contamination then they'd have stopped selling their test... as it is it seems that quite a few people have received new results this week. If the WPI felt vindicated, would they really be willing to keep quiet about it for long?

    Must know. Must know. I can't believe I've been on tenterhooks for so long.
  13. George

    George waitin' fer rabbits

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    Last time we got the info from the CAA web site and one of the face ook pages but I can't remember who. I was hoping this time it might show up on say the WPI, or the CAA but nothing. When the NIH ME/CFS web site was taken off line I thought maybe they would put the new site up with a section for the various phases of the study since they are so important. The silence along with the "mums the word" bothers me.

    Oh and yeppers it is the BWG which means Dr. Mikovits and Dr. Vernon and Dr. Holmberge and well all those guys. I'm with Esther this is too important to sit on and that nice Dr. Glinnis promised at CFSAC.
  14. Sasha

    Sasha Fine, thank you

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    Is it back online with anything at all? Or still just off?
  15. alex3619

    alex3619 Senior Member

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    Hi everyone, I would like to say that if the information is being delayed in order to further the BWGs plans (and their collaborators) then it is likely we will hear a lot more than just the results, but also how they plan to deal with the issues raised. In other words, it wont just be a good holiday present, it will be a fantastic one (unless they found major problems of course and are trying to get all their ducks in a row...).

    Bye,
    Alex
  16. alex3619

    alex3619 Senior Member

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    Hi Sasha, this is from the trans NIH working group:

    http://orwh.od.nih.gov/cfs.html

    The entire Trans-NIH ME/CFS Research Working Group website is currently under construction. Please check back later. Thank you!

    Are there any other sites worth checking in the NIH?

    Bye,
    Alex
  17. Sasha

    Sasha Fine, thank you

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    Thanks, Alex.

    If it's under construction, surely this suggests that a big announcement is imminent and is embargoed? Otherwise I can't see why they'd take it offline at all.

    I'm not sure how these things are done in big organisations like this nowadays. Presumably they'd have a central NIH website unit that gets a schedule of jobs and a go-live date, with the unit being provided with the new material by a certain deadline. But it seems odd to take the old info off and leave it looking like a building site (literally!) in the interim. In these days of cut-backs, maybe this just indicates that their web unit is short-staffed.

    Maybe I'm just grasping at tea-leaves to read now...
  18. George

    George waitin' fer rabbits

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    Good question Alex I tried typing in BLood working group but just got a bunch of articles. This is for all the marbles, it will tell us if WPI or if CDC was right. That's a heck of a lot hanging in the balance and I would feel much better if the answer was out and we could start dealing with the fall out.

    Still waiting to exhale. (grins)
  19. Otis

    Otis SeƱor Mumbler

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    Yes, keep your word or lose our trust. We make noise when you lose our trust.

    To press this, we need quotes (as specific as possible, from the CSFAC video with a link and time index (the videos are archived by day on the CFSAC website) would be a great method for those quotes), names, places and dates.
  20. Cort

    Cort Phoenix Rising Founder

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    I'm starting to think the same thing George - a bombard them with emails, etc. campaign might be necessary. I should be able to pull quotes out where they said "we will be releasing this info quickly".

    There could be something with publication...that is the best way to get the info out to the research community. However, publication policies differ between journals and some of them don't mind if you announce your results. I tend to think to guess that George's mule-like resistance to take the public into account is right..but who knows?

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