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XMRV Vip Inconclusive

Discussion in 'XMRV Testing, Treatment and Transmission' started by hensue, Dec 2, 2009.

  1. Alice Band

    Alice Band PWME - ME by Ramsay

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    I had an email from a Cheney patient. She was positive on both VIP tests. She said that all 13 of the Cheney patients that had been tested around her time were positive for ONE of the tests

    (no other data sorry)
     
  2. Esther12

    Esther12 Senior Member

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    I guess it's possible that those with positive tests would be likely to google XMRV, end up at this site, and vote.

    There could be some self-censorship amongst members getting negative results.

    I hadn't thought that if only 10% of CFS patients had XMRV, that would be close to normal. Durr.
     
  3. _Kim_

    _Kim_ Guest

    What interests me most about our admittedly flawed polls is that they are showing that several people have tested positive. What WPI found in their patient sample is showing up in the general CFS population. I assume, too, that the members that posted their positive results live in different regions in the U.S. and so, our poll probably represents more geographic diversity than the WPI study.
     
  4. _Kim_

    _Kim_ Guest

    Thanks for passing on that information Alice Band. When I speak to my doctor next week, I will ask her for the lo-down on the results of the patients she's tested so far.
     
  5. Parismountain

    Parismountain Senior Member

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    Reading that note of caution carefully posters are picking up on the 10% number as a hit rate on the virus. The way the english reads to me is that Dr. Bateman is saying in her collection of patients 10% look like WPI's collected sick patients. There is nothing in that statement indicating her entire patient collection has been tested and she's finding 10%.

    Maybe I'm wrong but from what Cort posted I don't see where the next few posts have read that incorrectly.
     
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    Parismountain wrote:

    I agree with this. Given how long it's taking people on this board to get results back, I doubt that she's tested enough people to give a percentage like that. Is she saying she's gotten 10 results back, and only one person was positive? I doubt it.

    I bet she's saying that only 10% of her practice meet the criteria the Science cohort did: classic biomarkers, fulfill '94 & Canadian def'ns, etc.

    But this is just speculation. :)
     
  7. fresh_eyes

    fresh_eyes happy to be here

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    Guess we better pm Cort to clarify what he said. I'll do that.
     
  8. Cort

    Cort Phoenix Rising Founder

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    Whoops! Someone emailed me and filled me in on her recent talk on XMRV. She apparently said that about 10% of her patients are as severely ill as the patients (multiple immune problems, really low VO2 max, disabled) in the Science study. She apparently did say that a good portion of her patients may be headed that way. She also said she has alot of patients who are still working.

    So it was all referring to the cohort in that one study. Nothing about her test results.

    If you remember from the CFSAC meeting the one question she asked of Dr. Peterson was whether he thought if more typical ME/CFS patients would test positive. He didn't want to speculate about that.
     
  9. fresh_eyes

    fresh_eyes happy to be here

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    Thanks a lot for clarifying, Cort.
     
  10. Providence

    Providence Guest

    reliable info about XMRV

    The CFIDS Association is updating its XMRV information regularly at http://www.cfids.org/xmrv/default.aps#info. Dr. Suzanne Vernon, the Association's scientific director, is a member of the new federal working group on XMRV, CFS and blood safety issues.
     
  11. _Kim_

    _Kim_ Guest

    Hi Providence, welcome to the forum. The link you provided doesn't seem to be the right one. Were you trying to link to this page?

    Our forum has a more extensive listing of sources regarding XMRV than is posted on the CAA site. In the Media, Interviews, Blogs, Talks, Events about XMRV section you'll find a few Sticky threads that contain most of the resources that have been published since the XMRV publication in Science.

    In looking at the CAA XMRV page, something popped out.

    The Whittemore Peterson Institute is still providing a free reprint link on their XMRV Research page.
     
  12. Noah_Scape

    Noah_Scape

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    Testing

    I have been suspicious of the XMRV as a cause of CFS/Fibro from the start, and now that 3 or 4 months have passed since the announcement, without confirmation of those results, and with the German findings [not finding XMRV], I am even more convinced that there is nothing to it.

    Look to the sensory processing mechanisms... Dr. Light etc... That seems like a more sure bet than XMRV is in explaining CFS/Fibro.
     
  13. Esther12

    Esther12 Senior Member

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    I'd be surprised if there was nothing to it. It might not lead to anything for a lot of CFS patients, but the original article was pretty compelling, even if its implications were a bit over-blown in some parts of the media. We'll have a good idea in a years time though.
     
  14. fresh_eyes

    fresh_eyes happy to be here

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    Even virologists who don't care at all about CFS one way or another are taking that paper extremely seriously. It may not be our silver bullet, but, short of outright falsification, I don't see how there could be nothing to it.
     
  15. Marylib

    Marylib Senior Member

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    Nothing to it?

    Noah-scape, I respect your opinion, but cannot share it. I cannot believe that there is nothing to it. We just don't know what it all means yet.
     
  16. Andrew

    Andrew Senior Member

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    1. I sent blood to VipDx to have blood drawn for CFS profile, cytokine, and XMRV.

    2. I was contacted and told I needed to send blood again for the first two tests. They said someone had left the gate locked (because it was Nevada Day) and the delivery guy could not get onto the grounds, even though their lab was open for deliveries. They said they needed a fresh draw for CFS and cytokine, but not XMRV. They told me that XMRV is a DNA test and it didn't matter if that blood was late. So I sent more blood for only CFS and cytokine.

    3. I was just notified that the XMRV test in inconclusive, and they want a fresh draw. I was told the reason they want a fresh draw is because my blood delivery had been delayed. Well, imagine that. So why didn't they just let me send it again the first time. I have to pay someone to drive me to the office to get blood drawn. I have to pay them to draw and mail it. I also just had the vein in my left arm get sclerosed from having needles stuck in it, and I'm very upset.

    4. I'm going to forget about the XMRV test. I'm not sending any more blood. I'm thinking of quitting my doctor for screwing up my vein. Because all of this this is in addition to the nightmare of all the lazy doctors I've seen since I got CFS, and also the careless doctors who kept letting things fall through the cracks during my cancer treatment.
     
  17. hensue

    hensue Senior Member

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    they always told me your blood had to be in 24 hours

    During the time mine was inconclusive. I wondered at this late date how do they test the blood when it is not still fresh. Your blood has to be there in 24 hours.
    Then again I know nothing about blood test.

    I am so sorry that happened to you twice? you sent blood no one could get in and had to send it again.

    How many tubes did you send the second time? I am so sorry about your vein. It sounds to me you have had a rough time. Did you say you have cancer?

    I hate that word. Hang in there you will get better. I really believe they are just so overwhelmed and waiting for another big lab to start testing.
    There is no way that a small lab could handle the whole us and canada?
     
  18. Koan

    Koan Be the change.

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    Andrew,

    That's dreadful. I think you need a break, a rest and then, later, when you are ready, a human being from VIP to explain to you, with all consideration, why you might consider getting on the merry-go-round again.

    But, first you need a break and a rest.

    Dreadful situation.
     
  19. fresh_eyes

    fresh_eyes happy to be here

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    *Shakes fist at Militant Somatizers* :D

    Hang in there, Andrew. I've been moved by your story and all you're going through - we're with you in spirit.
     
  20. Andrew

    Andrew Senior Member

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    Thanks to everyone for your support. I'm going to wait until next month to see how I feel about this.

    I don't know. I didn't look while the blood was drawn.

    I had squamous cell carcinoma on base of tongue. I also have prostate cancer, although it does not appear to be the aggressive kind mentioned in the XMRV studies.
     

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