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Katz webinar on XMRV Coming up on Thursday

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Aug 10, 2010.

  1. Robyn

    Robyn *****

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    I bet the answer is already known in some agencies other than the NIH. But that's my guess.
     
  2. V99

    V99 *****

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    I would have thought so.

    I don't remember exactly how he said it.

    They must be having so many meeting right now.
     
  3. V99

    V99 *****

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    I really liked him. He just gave us the science, and avoided letting any emotions get in the way. He's a scientist!
     
  4. Sasha

    Sasha Fine, thank you

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    Hope you are writing a summary, Cort!:Retro smile:
     
  5. leaves

    leaves Senior Member

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    Yes me too, spoiled we are :)
     
  6. Otis

    Otis Señor Mumbler

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    I send a question along the lines of "without speaking about specifics, are you made aware of pre-publication data in order to react quickly to emerging pathogens?"

    The answer was yes, which came to me directly in the question box, was "Yes". The response came from Kim, I think. I'm putting that elephant on the WPI side of the scales. Some of it was the tone of his voice. I get the feeling he'd be much more skeptical without that elephant.

    But please Show Me The Paper. Please.
     
  7. Robyn

    Robyn *****

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    Yes and there's the possibility that getting infected doesn't mean you get sick right away. Look at Hep C people could carry it for 20 years then get sick. And who really knows how long each of us have had the virus if it does turn out to be XMRV. I know my illness was triggered by a virus and I believe a weak immune system at the time. And then if someone did contract it from blood, they would most like be told they were just tired or depressed. There's too many variables I think.
     
  8. Robyn

    Robyn *****

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    He could have been talking about the Science paper on the 90 percent. Sorry I wished I written down word for word. I don't recall anything about false positives coming up. The 3.7 in healthy controls was from the Science paper I believe. Nothing on recent healthy controls.
     
  9. V99

    V99 *****

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    I agree ;)
     
  10. V99

    V99 *****

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    The one other thing I remember is that he quoted from a couple Kerr studies. The gene expression study and this one:

     
  11. George

    George waitin' fer rabbits

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    Yeah, he was keen on Kerr. His personal theory leans to Kerr's data as well.
     
  12. V99

    V99 *****

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    What's his personal theory?
     
  13. parvofighter

    parvofighter Senior Member

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    Access to CLINICAL tests - how to facilitate this?

    At least a year until a CLINICAL assay is ready for XMRV diagnostics?
    Dr Katz gave a preliminary answer to one of my earlier questions about the process to translate analytical assays to clinical assays. As I recall, he initially said one year, then he gave more info on West Nile, said it took THEM a year, and that because XMRV was currently perceived with less urgency, it could take longer for us.

    Can anyone answer any of the following questions I asked in the Amy Dockser Marcus thread: http://www.forums.aboutmecfs.org/sh...XMRV-Working-Group-Report&p=105519#post105519
    Fostering a sense of urgency for availability of clinical tests for XMRV
    Which raises my final question: What can we do to impress on the blood folks and other key stakeholders, the urgency for patients with ME/CFS to have diagnostics and clinical trials asap (in the event XMRV is found to be causal)? Which agencies/key contacts should we be directing educational/advocacy letters to?
     
  14. Sasha

    Sasha Fine, thank you

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    That's interesting, parvofighter - surely to protect the blood supply, they'd need a clinically effective test? After all, it's not a bunch of XMRV-spiked test tubes who will be turning up to blood donation centres to give their blood! Can they really afford to take a year to develop a test to protect the blood supply, let alone accurately diagnose people? Have I misunderstood what you meant?
     
  15. VillageLife

    VillageLife Senior Member

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    He said that they have to be really sure If xmrv causes illness, because they may have to pull 4% of blood donors and he said that 4% is enough to make a difference. He said they will need to Identify the 4% with a test.
     
  16. parvofighter

    parvofighter Senior Member

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    Partial answer

    Hi Sasha, I wish I had taped the presentation. In response to your questions...
    This is my sketchy understanding, and please if anyone can add to this, please do! My understanding of what Dr Katz said AND inferred is that there are actually 3 stages.

    1. Analytical assay - to see if XMRV can be detected in "spiked" normal blood or water with designated amounts of XMRV
    2. Donor Screening Assay - To screen donor blood for XMRV. From my notes on Dr Katz' presentation, these are usually DNA-based tests, eg. PCR. From what I understood it is not feasible to use these widely for the Diagnostic Assay
    3. Diagnostic Assay - The Holy Grail: what we're waiting for, to take to our docs and beg for treatment once causality is determined.
    If I understood correctly it's the Diagnostic Assay that will take over a year. But the question remains whether a VIP serological assay (once available) - together with their other XMRV tests might be enough to get the ball rolling for the early adopters...?

    Can they afford to wait? Can we afford to wait?
    THIS is where our advocacy/education efforts are needed, I believe. How can we facilitate this process?
     
  17. Sasha

    Sasha Fine, thank you

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    Thanks, parvo - but doesn't WPI already have a diagnostic assay? I know that they're working with other labs to get a gold standard version (I thought Abbot pharma were involved) but is their version too expensive/involved to be practical for mass screening?
     
  18. urbantravels

    urbantravels disjecta membra

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    There is that little matter of FDA approval...
     
  19. parvofighter

    parvofighter Senior Member

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    Is it Validated?

    Urbantravels nailed it: FDA approval.

    Early adopters?
    The part I'm not clear on is what can we DO with the forthcoming WPI assay?
    For those of us with enlightened, educated physicians, the WPI test may be sufficient - together with our RNase-L deficiencies, NK cell dysfunction/numbers, documented opportunistic infections, etc - to consider at least more immunomodulatory therapies, and ARV's when indicated. It may be sufficient to encourage some physicians to look for gamma T-cell clonal rearrangements in long-term ME/CFS patients where there may be a suspicion of lymphoma risk. It may be enough to encourage leading-edge neurologists to do SPECT scans... My suspicion though is that the WPI test will be for the "early adopters", and that the majority of patients might need to wait for a government-validated test. Not that that's "right" or "fair"... may just be the way it unfolds.
    The majority may have to wait??
    But if I'm not mistaken, the majority of patients will still need to wait for an FDA-approved, government-validated test, before we get any financial coverage for this - or wider acceptance by less-informed physicians, of the test as "legit". Which underscores the importance of advocacy to educate the blood folks and other stakeholders on WHY this is urgent - from a scientific perspective.

    And of course we have to wait for causality research. And the media response to XMRV - when embargos are finally lifted - may change the way things unfold.
     
  20. dannybex

    dannybex Senior Member

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    Yes...too complicated from what I gather. Seems to me some of the PWC's that sent their samples off to be tested had to be retested several times before they got a 'result' back.

    ???
     

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