xmrv test do you think I am foolish to do it now??

Discussion in 'Fibromyalgia Main Forum' started by hensue, Oct 12, 2009.

  1. hensue

    hensue New Member

    I would like your thoughts on the subject even though I will probably do it anyway. What could it hurt?
    I have thought about it long and hard.
  2. Rafiki

    Rafiki New Member

    I wouldn't do it now.

    I will wait for WPI to develop and test their test in order that my results are in accordance with their research.

    As far as what it could hurt... I think a false negative could be problematic in many ways. For instance, my disability insurance could certainly be impacted negatively by a false negative. Especially if XMRV is found to be to ME/CFS what HIV is to AIDS - no XMRV = no ME. I would then have provided false evidence that I do not have ME.

    A false negative could also convince a skeptical doctor that even if this paradigm is sound, you don't fit it and they were right to dismiss you.

    A false positive can have equally damaging problems: inappropriate, and possibly dangerous, treatment.

    I'm waiting.

    Peace out,

    ETA I think we need look no further than the ongoing controversy in the Lyme community regarding the results of various labs.[This Message was Edited on 10/12/2009]
  3. hensue

    hensue New Member

    dangerous treatment believe me I will not do any treatment until it has been tried and true.
    Whose to say the WPI does not have something to do with this lab?
    You know they have to have a reliable test right now.
    I do get your reasoning and I appreciate it.
    I love your
    peace out

    mine is later
  4. jasminetee

    jasminetee Member

    I think Rafiki's point is good too. I hope you get your Disability.

    [This Message was Edited on 10/12/2009]
  5. Rafiki

    Rafiki New Member

    From WPI:

    "The WPI has developed a blood test for the detection of XMRV. The test is currently undergoing clinical evaluation and validation. We hope to have a clinical test available to the public within the year."

    I guess I'm wondering why their test would have to go through clinical evaluation and validation if there were existing tests which were sufficiently accurate.

    I know some will say it has something to do with a profit motive but would it not be possible for them to quickly replicate an existing test, put it in a kit, and begin mailing it out if that were the case.

    I just want to move with an abundance of caution.

    PEACE OUT :eek:)

    ETA The research alone may help your case. Fingers crossed![This Message was Edited on 10/12/2009]
  6. TigerLilea

    TigerLilea Active Member

    Would this test even be available at your local lab at the present time? Also, is there any treatment should it show up positive? That is the one question my doctor always asks me if I ask for a test that isn't considered the "norm". As she pointed out, it is rather pointless, and expensive, to run an unproven test that isn't going to change anything at the end of the day if there isn't any treatment option.
    [This Message was Edited on 10/12/2009]
  7. hensue

    hensue New Member

    If it showed up positive at least these doctors would not say it is all in your head. Send you to a physc. after you have been to a well known clinic and diagnosed with fibromyalgia and chronic fatigue.
    I would never start treatment without it being tested on other people. If I do have it then maybe this would give my docs a marker as such and the ssdi lol..

    I want to get this ball rolling doesnt look promising in the near future anyway.
    for ssdi or a treatment.

    loving these responses and taking it all in believe me.

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