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Finally - XMRV+ blood supply/standardized tests/MECFS Apr 4 '10

Discussion in 'XMRV Testing, Treatment and Transmission' started by shrewsbury, Apr 4, 2010.

  1. Gerwyn

    Gerwyn Guest

    If XMRV is the passenger who is the driver!
     
  2. bel canto

    bel canto Senior Member

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    Oh, my - let's hope there's not more to find! Could we all survive much more uncertainty?
     
  3. parvofighter

    parvofighter Senior Member

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    Don't worry about that driver!

    Hi guys,

    Don't get me wrong - I DO think XMRV is driving this:victory:.

    I was just responding to several instances in which XMRV has been postulated as a potential "passenger virus", and I perhaps incorrectly assumed that they were inferring that passenger viruses are always benign. I think not, but can someone shed light on this? My point is that even IF XMRV were "just a passenger", that passenger virus could in fact cause huge damage - in fact eclipsing other factors...

    My scientific instinct is that that doesn't hold water. But even if it did, a passenger can stir up some major @#C*!. And that needs to be treated. :Retro smile:
     
  4. George

    George Guest

    Use the Force Parvo, Use the Force (grins)

    Hey Adam, you know I stole the the "sausage grinder" comment from John Coffin. (grin) I figure to use it as we go along. Now we're up to slaughtering the pig and we've drained the blood. (big grins) Cause there's now an honest to goodness "serology" test!!!!!!! At this rate we might have some sausage by the end of the month!

    Parvo - think about this. All those viruses that used to kill the poor HIV/AIDES folks were really just passengers. Kind of like people with Chronic EBV are 7 times more likely to get lymphoma. (and I got the reference to that one, wink) how many "opportunistic" viruses and bacteria do we have as CFS/ME'ers anyway, and how much trouble do they cause us and just how much do they shorten our life span? Maybe someone will do a study now. Wouldn't that be cool??

    The recent article about how immunity is directly tied to aging was posted on msnbc.com recently. That information came from originally studying the aging process in HIV/AIDES patients. We already know that the envelope produces neurotoxic proteins. And Dr. Goff has repeated that he believes that this is very much an MLV virus in it's behavior. Which as you dug up wayyyyyy back when is some seriously scary stuff!

    I'm hanging with you Parvo; on the dark side where XMRV is driving the bus!
     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I'm disappointed. I thought we would get an announcement in March that there is a standard test. Maybe FDA would approve by June. And we could all go to our doctors this summer in a big swarm to get LabCorps and Quest do our tests, paid for by insurance.

    This article makes it sound like we are more steps away from that then I thought.

    I do agree they are sounding all authoritative in this article, like they are the ones in control of this whole XMRV thing. When cause is established, the WSJ reporter should be given a copy of Osler's Web and a plain manila envelope in a dark parking deck.

    Don't get me wrong, I am glad to see so much interest and the issue of public health concern being raised. I suspect some other news organizations are watching. Drug Companies being interested at this stage is great news. I can't wait to see the commercials. (Take that all those who don't believe it is real.) And by the way, another group that is likely very interested are urologists.

    But, in my current state of relapse and passing on a few job offer recently, I want to know....

    When
    Will
    There
    Be
    An
    FDA-approved
    Test
    Covered
    By
    Insurance?

    Labcorps..... Quest..... We want to hear from you too. Don't be left out. The train is hurrying down the track. Come get on board. http://www.youtube.com/watch?v=vxM9GHmoxEU

    Tina
     
  6. parvofighter

    parvofighter Senior Member

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    Good dog George, good dog!

    Ya nailed it again George. Woof!:D
     
  7. CBS

    CBS Senior Member

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    Parvo,

    This is good to know. Thanks for doing the digging on this. I'm a bit too gassed to post anything reasonably coherent right now.

    I do think that the writing is on the wall. If XMRV isn't IT, it is clearly something and THIS something has opened the door if it isn't THE way itself (told you I wasn't up for coherence).

    Back to Goff, I find it quite interesting that Goff had doubts about the oncogenetic properties of XMRV and that he suggests it may be the immune/inflammatory impact of XMRV on a person with an unfortunate genetic vulnerability that leads to the XMRV/prostate cancer association. I think that this line of thinking betrays his feelings about the broader potentially severe immunological impact of XMRV.

    ETA: If Goff is right about prostate cancer then we aren't talking about a case of simple causality. We're talking about a situation where multiple factors have to be in order and there is on one cause of prostate cancer. This would be consistent finding XMRV in 25-30% of those with the familial form of prostate cancer (other factors may be able to weaken the immunity in the 75% that is XMRV negative but have the same genetic vulnerability).

    I have suspected that something similar may be at play in CFS folks and that this might account for the lack of symptoms in so many (but clearly not all) of our spouses and family.
     
  8. JAS

    JAS

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    Does anyone know conclusively where the UK blood supply comes from, reason being I really want to nail Wessely on this...that XMRV isn't in the UK. As far as I am aware the UK were still importing US blood in 1985. I spoke to the British Haemophiliac Society and the person I spoke to said that they are importing blood products from the US because of CJD over here. Does anyone know if the UK top up our blood bank with American blood? Logically speaking, XMRV works like HIV and is blood borne...it has to be here.
     
  9. fred

    fred The game is afoot

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    The UK has to import plasma and/or plasma-derived products because of the risk of 'home-grown' plasma being contaminated with vCJD. The only UK company that makes plasma-derived products is BPL, which has just bought a plasma collection centre in the US. One would assume, therefore, that the plasma for all UK plasma-derived products has been sourced from the US - unless the plasma collection centre is, itself, collecting plasma from elsewhere.

    I do not know whether the UK imports whole blood from other countries.
     
  10. JAS

    JAS

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    Thanks very much Fred....great info....anyone know anything about the general blood banks?
     
  11. garcia

    garcia Aristocrat Extraordinaire

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    Yes but we already know its here in the UK. More than half of the UK group of patients who tested in December tested positive for XMRV. The WPI is currently testing around 200 UK patients as part of its new trial. We should start knowing in 3 weeks what proportion of those are testing positive. Pretty soon we should have published evidence of the fact that XMRV is very much in the UK.
     
  12. fred

    fred The game is afoot

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    I think JAS is trying to circumvent the inevitable (albeit ludicrous) contention that, even if XMRV *is* in the UK, it is a different type of XMRV to that found in the US and does not cause ME or does cause such a severe type. The contention is null and void if XMRV is being imported via blood/blood products from the US.
     
  13. JAS

    JAS

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    Thanks Fred exactly correct, yes, Garcia, I know it is here...I have it. However I am just trying to defy the logic of those saying it isn't or that it is a different type. Does anyone know if and how the general blood banks are topped up if there is a shortage?
     
  14. citybug

    citybug Senior Member

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    I asked the WSJ writer, she said: In the first phase, the labs include CDC, FDA with two different ones, NCI, Whittemore Peterson Institutes lab, and Blood Systems Research Institute.

    I was hoping for Emory with their antibody experience "XMRV Infection in Patients With Prostate Cancer: Novel Serologic Assay ...". WPI is working on an antibody test but VIP isn't using it yet. I think they are testing to see if anyone has a reliable test now. Maybe pressure from the blood bank? Seems like whatever tests they can throw at it at present. I wish we knew more about WPI serological test. We don't know if any of the others have one. It is great they are taking seriously and urgently. Maybe some labs think they have a good test now and want to check. That would be fantastic.

    I think the WSJ article is excellent. At first I thought it was combining the blood bank with some other news, but really covers a lot of the bases, checking in with many parties involved.
     
  15. citybug

    citybug Senior Member

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    My doctor said Medicare was covering the VIP test (unfortunately mostly negative results).
     
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    kdp, wow, if that is true, then I would think someone would have posted that.

    That is big news.

    Tina
     
  17. citybug

    citybug Senior Member

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    They could always change their minds. There haven't been that many tests done, and only some would be on that insurance.
     

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