Do you see the above this page Emory is developing a Test for XMRV!

Discussion in 'Fibromyalgia Main Forum' started by spacee, Apr 10, 2010.

  1. spacee

    spacee Member

    If you read the article...they pretty much gave the NIH and CDC a kick in the shins (or higher!)
    for not getting on this sooner. XMRV known for sure since 2006.

    I think they should have the test within months...then the HIV antivirals will be available
    for treatment. (Another post on this page by Karinaxx about they have narrowed the
    drugs that work the best from 28 down to 4.

    Help is on the way!

  2. TigerLilea

    TigerLilea Active Member

    I won't get tested until BC BioMedical offers the test. We still don't know if XMRV is going to be important or not as far as CFS is concerned. I find it strange that other labs aren't able to find any indication of XMRV in their samples. According to one source I read it shouldn't matter if other labs aren't replicating the exact test that WPI used. If XMRV is there, it should show up.
  3. gapsych

    gapsych New Member

    I think the link between xmrv or at least a virus with prostate cancer has been known for a while. Is this what they are referring to?

    Guess I better go read the article and I will look at Karinaxx's post.

    I hope what you say is true about a test. But shouldn't the original study first be replicated more than once, before putting our eggs in one basket?

    Hindsight is 20/20. I am not excusing the CDC or NIH nor arguing what you are saying. I am bringing up some issues that may affect the outcome of tests or what other scientist may say, even if people are positive.

    There are just so many unknowns at this point.

    I guess time will tell, but thanks for the interesting information.

  4. spacee

    spacee Member

    The test that Emory is getting ready is to test the nation's blood supply. That is why they
    said this test should not have been delayed. The NIH knew about the virus since 2006.

    When HIV was new, there were some false positives and negatives til they got the kinks
    worked out.

    I tested positive for a retrovirus in 1991 at the Cheney Clinic...then was seen at the NIH
    and they had the lab test and never mentioned it.

    I'm not going to get tested until my insurance covers it. I may test negative...some of
    Cheney's patients who are in the same family and have the same illness..two were positive
    one was negative.

    I do feel like progress is being made. That they recognize openly that our nation's blood is
    involved is a huge step.

    That out of 28 HIV drugs, 4 cause XMRV to not replicate...that is huge.

    Well....a lot further than the past 30 years.

    I do think that the focus will be on the nation's blood and the prostate cancer before it
    dwindles down to us (except among our own researchers)

  5. ladybugmandy

    ladybugmandy Member

    for me, its a done deal. as far as im concerned, xmrv causes CFS. i was bedridden and suicidal 2 weeks ago, after almost 18 yrs of this disease. i took azt 300 mg and now, i am up and about, about 25-30% better.

    please do not take this drug without being followed by an infectious disease doctor.

  6. spacee

    spacee Member

    Thrilled you have some improvement. I am so glad you posted.

    I see my doc on Tues. He said he would order any meds recommended.

    No, he is not Infectious Disease. But he is darn smart about things.
    Like doing liver tests.

    I can't say that he will order it but it is encouraging.

  7. aftermath

    aftermath New Member


    Glad to hear that things are going (somewhat) well.

    Please continue to be careful and keep us posted.
  8. bigmama2

    bigmama2 New Member

    about xmrv test

    i would love to get tested and also see my brother get tested.
  9. bigmama2

    bigmama2 New Member

    keep us posted on this board how you are doing.

    i am so glad you are doing better right now. i hope it lasts. it may go up and down, so try to stay calm. my bro and i both have the ups and downs with this illness severity- like a rollercoaster. we are trying to learn to "ride" it.

    best wishes- and hugs

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