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A Man From Whom Viruses Cant Hide

Discussion in 'Other Health News and Research' started by CBS, Nov 22, 2010.

  1. urbantravels

    urbantravels disjecta membra

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    George, I tend to agree with you (that the "loose lips sink ships" attitude will only lead to a bigger hoopla later) but honestly, I don't think anybody really knows how to proceed in a situation like this. Scientists aren't used to having agitated patients breathing down their necks via the internet, and agencies have their own agenda, part of which is bureaucracy and politics but part of which is also the responsibility of saying anything "official." Agencies can't act on preliminary results and they can't advise doctors, patients, and the general public about what to do at this point. There's a much larger question here about how science proceeds, how information gets shared, etc.

    I hates waiting as much as the next puppy, bird, flower, or Little Dummy (tm) But it's possible that a big stink when everything finally comes out would have some beneficial effects - more press attention, more general awareness (even if the info gets garbled, as it inevitably will), perhaps more outrage on behalf of the ME/CFS sick who have been shelved for decades without any good faith, well-funded effort going forward to actually study the biological side of the disease...A scandal might be more fun than you're expecting. ;)
     
  2. jenbooks

    jenbooks Guest

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    By the way, I am a fan of Zimmers on facebook, and this is what he wrote yesterday on his FB page:

    Blogs / The Loom
    The traffic jam in your head (now with Slashdot goodness)
    The empire of viruses: my story in tomorrow’s New York Times
    submit to reddit . .


    Recently I paid a visit to a place where the world’s most mysterious viruses go to find a name. The result was my profile of Ian Lipkin of Columbia University for tomorrow’s New York Times. I first started thinking about this story when I heard Lipkin give a lecture about his work identifying unknown viruses this spring. And when I read this review of Lipkin’s, entitled simply, “Microbe Hunting,” I knew it was time to get cracking.

    One thing I didn’t have room for is the fact that Lipkin has gone all Hollywood. By which I mean that he’s helping Steven Soderbergh on a new movie on a virus outbreak called Contagion, starring Matt Damon, Kate Winslet, and other big stars. Lipkin seems pretty stoked about the movie, which is slated for 2011, so I’ll definitely be keeping an eye out for it.
    --

    So folks, that's why he wrote the story. And folks, Carl Zimmer can mostly write the stories he wants. He's one of the best out there. Stop second guessing.

    And please be relaxed and optimistic if at all possible.
     
  3. George

    George waitin' fer rabbits

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  4. Dreambirdie

    Dreambirdie work in progress

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    These kind of discussions make my head spin... speculations, second guessing, mind reading, optimism vs pessimism...

    Jeeeeez, it's just an article, not the end all and be all of XMRV research finalized.

    We will just have to stay tuned for the coming attractions, while keeping in mind that the main feature is still under production.
     
  5. roma

    roma

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    hey this movie is being shot in Chicago two of my friends are extras in the movie they were shooting last week....it's supposed to be a good movie..
     
  6. Bob

    Bob

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    Hi George,
    I totally understand why you are pissed about it all...
    The whole process is so secretive, with no transparency or accountability.
    I wasn't defending the secrecy, I was just being my usual ever-optimistic self about the eventual outcome, based on my understanding of the details of the government studies.
    I don't think any of us expected to have no complete follow-up confirmation study for XMRV this far after the WPI's first study.
    I understand why you are worried about the lump in your breast... I wish we knew what treatment Andrea Whittemore was undergoing, because she seems to be experiencing some success.
    Take care,
    Bob
     
  7. George

    George waitin' fer rabbits

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    Ahhhh, but that's what this is all about. Will we get the coming attractions or will that nice breast cancer study ever be published, and how about that cervical cancer study? (eyebrow wiggles and big grins)
     
  8. Gemini

    Gemini Senior Member

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    Cort,

    Good point. Dr. Mikovits, during Q & A's at the October 17th NJCFSA conference, said she, Dr. Alter, and Mr. Switzer wouild be meeting with Ian Lipkin on November 4th.
     
  9. Bob

    Bob

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    I've gathered the relevent info about Lipkin's study, and the BWG study, and like I mentioned earlier, I find it very reassuring...

    Lipkin Study

    Basically, Lipkin says that even if the WPI are the only group, in his study, who can detect XMRV in the samples, and they can detect it at consistent rates with blinded samples, then that's the only result he needs. And I imagine that a generous margin of error will be allowed for the initial study, so they won't have to be 100% correct for all the blinded samples.

    And I also read that the patients he is using will fit the Canadian consensus criteria, and the patients would have to have had sore throats or tender lymph nodes when they got ill (I'm not clear about the details here, but I think that Judy basically insisted that the patients have what we recognise as definite ME, and not another type of fatiguing illness.)

    Ah, I've found the quotes:

    And here's the other source of info that I was looking for...
    It's one of Cort's recent 'XMRV Buzz' entries...

    I also thought that I'd read that Lipkin will be using samples from Cheney's and Bell's patients, but I can't find a quote for that, and I'm not 100% sure that I did read it... If I find the quote, I'll post it here.


    Blood Working Group

    I think that the blood working group is carrying out similar, and even more thorough work than Lipkin, and they intend to do it on a larger scale...

    And remember that the BWG is well past it's initial phase now... They've already detected XMRV in phase I, and they couldn't have done this if XMRV does not exist or if it's just a fantasy rumour virus... From the quote below ("All the labs were able to detect at least some amount of XMRV"), it seems evident that the researchers involved in the BWG know that this is a real virus they are dealing with.

    The quotes, below, also show how the WPI are intrinsically involved with the BWG, and show how reasuringly thorough the BWG research is.

     
  10. Otis

    Otis Señor Mumbler

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    Thanks Bob, that was most helpful.
     
  11. Cort

    Cort Phoenix Rising Founder

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    Beautiful Bob -thanks!
     
  12. Bob

    Bob

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    Well, it's not often that I get called 'beautiful'... Actually, I think it's a first! Thanku Cort! :hug:

    I did read that right, didn't I?!? :D
     
  13. Sean

    Sean Senior Member

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    Thanks, Bob.
     
  14. Gemini

    Gemini Senior Member

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    Bob,

    Thanks for the excellent review & putting it altogether.
     
  15. Navid

    Navid Senior Member

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    i too at this point have faith that Lipkin has good intentions and is not involved in a conspiracy to cover things up. especially since WPI is involved. He is also working with Dr. Montoya, who takes our disease very seriously, and finally he has close connections with Dr. Singh, who as we all read yesterday knows what she's doing and is working hard and fast.

    On the other hand....many have walked/crawled this long and twisted road for years....it's difficult to trust after years of deceipt, humiliation and being swept under the carpet. That is the history of this disease, and how people with the disease have been treated.

    i would think us a naive group, if we did not hold Lipkin and everyone involved in studying the disease to the highest standards at this point.

    someone wrote this in one of the many posts on this thread: in other terms, if you had a choice of James Bond or a green recruit to the CIA, who would you prefer?

    well, if James Bond has been double agent for years: lying and cheating, then I'd rather have the green, new agent.

    we just don't know yet, if we have a good guy or someone who is going to lie and cheat us of our right to proper healthcare/treatment.

    All these new ppl working on me/cfs need to gain our trust and as i stated in the beginning, after years of abuse it is very difficult to trust again.

    We trust Dr. Judy, Dr. Singh, Dr. Montoya...we need to learn if we can trust Dr.Lipkin, Mangan and Fauci.

    I hope in the end Lipkin confirms WPI's initial findings and they all work together to find us a treatment ASAP. They can all be heroes in my eyes.

    Bob: thanks for your nice summary.

    Happy Thanksgiving!!!!
     

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