Cheney's Patient's XMRV Stats

Discussion in 'Fibromyalgia Main Forum' started by Elisa, May 26, 2010.

  1. Elisa

    Elisa Member

    Hi All,

    Found an interesting quote from a reading blogs on the Invest in ME conference in London...

    "In his lecture, Dr. Cheney indicated that 38 of 47 (81%) consecutive patients in his practice were XMRV positive by culture testing at VIP lab."

    So interesting!

    God Bless,


  2. skeptik2

    skeptik2 Member

    Wow, wonder what the REST of them really have?

  3. aftermath

    aftermath New Member

    I think I can speak for all of us when I say that my greatest fear is that a big breakthrough may come with a rock-solid biomarker/treatment protocol and that I test negative for it.

    If the big one comes (XMRV may or may not be it), the scariest thing in the world would be ending up in the group that gets "left behind" with more wastebasket diagnoses, depression allegations, etc.

    The people in this group are likely to be further marginalized than ever before.
  4. karynwolfe

    karynwolfe New Member

    Thanks so much for sharing, Elisa! Very interesting indeed...

    And I do agree with the above poster concerning, what if we can't test positive?

    I don't know about some of you, but I am about as classic an M.E. case as one could possibly get. I have every typical trait and onset and progression as you would expect from reading all the valid research out there... I do wonder, what happens if I don't have it? Or what if it turns out to be like Lyme, and even if you DO have it, you only have a 50-50 chance of it showing up regardless?

    I mean, granted, with results like the 98% found by Mikovits et al., we're looking at something better than that... I suppose I'm just thinking about the tests we already have, the ones that were pulled from the market (right? I thought they were). I don't know who would dare to get tested when the tests are so inaccurate, so I hope in the future (SOON!) we get a combination of tests that can, with as much accuracy as the WPI study, determine whether or not we have XMRV.

    But this just brings us back to the fact of, what if you're classic M.E. and then don't have this virus? I'd just hate to get my hopes up--this virus explains so much--and realize that it's not as much of a landmark as I had hoped. Because in all honesty, every bit of research (valid, M.E. research) up unto this point would say I have M.E., and I could not let one researchers suggestion tear down that foundation. (In other words, I'd have to believe that XMRV isn't really a biomarker, before I believed that I had something else.)
  5. spacee

    spacee Member

    One was a family of three. All three got ill at the same time. Mother, son and daughter.
    While in Europe for a sabbatical.

    The adult kids tested positive, the mother tested negative.

    How could she not test positive? Possibly the products that Cheney uses to
    fight viruses. They had all been on the for years.

    That is a big problem for me. I cancelled my test cause I didn't want to pay
    $400 to find out I'm negative when I could well be positive.

    Going to wait till insurance covers it. Might be a wait.

  6. ladybugmandy

    ladybugmandy Member

    i am in that boat. classic CFS..after mono...severely affected...LMW Rnase L...all of it...but no XMRV, even with a not-yet-commercialized antibody test. am getting a new one as part of research....but i dont think i am gonna have it. they tried serology, culture (twice) and PCR...2 different samples of blood. i am praying i have it....but doesnt look good

  7. spacee

    spacee Member

    That my doc will give me the med even if neg, if I sign a waiver of holding him/the clinic
    responsible for harm done.

    Hoping and praying.

  8. consuegra

    consuegra New Member

    de Meirleir told me that he was either doing or going to do stomach biopsies on XMRV negatives (not sure which ones) as he thinks it is in the gut. This was something that I never heard. Also they might be testing saliva after the german study, so don't give up. I think this sucker hides or goes dormant and maybe even evades antibody testing, if that is possible.

  9. ladybugmandy

    ladybugmandy Member

    thanks chris. wow didnt know about stomach biopsy. what i want is brain biopsy but that will never be done, i'm sure.

    dr. mikovits told me the virus is probably hiding in tissue for me.

    someone told me that if the virus is in brain or bone marrow...we wouldnt make antibodies or something...?