Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

XMRV Positive in the U.K.

Discussion in 'XMRV Testing, Treatment and Transmission' started by joyscobby, Jan 11, 2010.

  1. omerbasket

    omerbasket Senior Member

  2. free at last

    free at last Senior Member

    I dont know anything Omerbasket its been like that ever since the fevers and eventual chronic illness threatened to make me lose my mind, and a aching to know what happened to me. like most i guess. infact untill Country girl showed me kindness ( thank you cg ) i didnt even know my results had come in, she thought i hadnt been on the forums because i knew nothing about it ( no network of friends you see ) But i have been around here a lot still searching for clues about all this illness like everyone. As you can see no one told me on this thread either that the uk 50 results had been in for a while now, maybe they didnt know. im guessing quite a few might have though, hopefully not ? i dunno ? were all human you see. some things hurt people more than they realize. like aching for a clue about a ill life. probably dont know what im talking about, its ok me neither sometimes. at least you talked to me, even if it was questions of confusuon about my facts i pick up on from papers and statements from members here like the 80 90% figure i read here
    This is fascinating stuff!

    Originally Posted by shannah
    Frank Ruscetti and Rachel Bagni isolated virus from the Lo/Alter patients (I believe it was those that had a fresh blood draw - the 8 of 9 that retested positive) and what they found was XMRV. THIS IS HUGE!!!
    This is very interesting...
    I wonder if they found XMRV in all 8 patients or just some of the 8?
    Were PMRV's just a red herring and did these patients actually only have XMRV? Or do these patients have PMRV's and XMRV's?
    [Edit: The Patient Advocate seems to have answered these questions:
    - Ruschetti cultured samples from Alter cohort and found x-variant in all of them.
    - indicated that X -variant and P-variant are two independent viruses]
    It will be intriguing to see what role PMRV's will be shown to have in people with CFS/ME.

    Originally Posted by shannah
    Lo/Alter ran the WPI UK samples through their probes and picked up a couple more positives than the WPI found.
    Does this put the WPI's UK results up to about 84% positive?
    I think that the significance of the WPI's UK study has been under-discussed... Probably because it hasn't been published yet.

    The WPI's UK study is a confirmation study of their original study, carried out in independent labs, and it shows that a large proportion of UK ME patients (about 80%) have XMRV. As far as I understand, these UK patients were not specially selected from clinics, but were randomly selected from online forums etc., so they are a disparate cohort, not a niche cohort.

    This is a highly significant study, and it goes a long way towards satisfying me personally about how widespread XMRV is, how significant XMRV is to the whole ME population, and the importance of the role that XMRV plays for all of us in our illness. In other words, it has almost totally got rid of any lingering questions and doubts that I had about XMRV its significance for the ME community. I now believe that nearly all of us will test positive for XMRV.

    Which brings me to my last points, im guessing im negative, always been negative, even when i needed to be positive
    for something, anything, just so i could fight back and see what it was that was doing it to me. you know the score you all do.
    So maybe negative aint actually negative, with better tests who knows. but just maybe my heart will be lost if thats the result. then ill never ever know. take it with me to my grave like the other negatives.. You know i actually feel very very selfish because i have kids, and for them i need to be negative, i want to be negative. but the person who use to panic when the fevers and crashes happend still wants to know a tormentor.And a reason.. Aint i selfish. if im negative im going to smile for my kids. Whatever it was that nearly destroyed me was real, and simon wessley and the other shrink they sent me too after the tests were all negative. can shove it were the needle wont go. they didnt experiance it. they know nothing about me. even though i tried to tell them, but it fell on deaf ears. whats new. Whatever my result should find out tommorrow im going to post it proud on here. then i might not come back, well maybe to learn. just not to talk, i have nothing to offer here, but self pity and sadness. nothing for anyone here. Not one of the lions. more a mouse really. changed my password to try and read my result, you wont belive what it said.well i laughed
  3. x+ brit

    x+ brit

    Originally Posted by coxy
    Hi, sorry i don't have the energy to keep going through this whole thread to see if anyone new has tested positive, is there anyway uk patients could have a separate poll for uk & other countrys for that matter that are xmrv positive or negative?​

    I've not posted here before. Just wondered if anybody ever set that up. I got my xmrv positive by culture result this week and just wanted to tell someone!
  4. leaves

    leaves Senior Member

    welcome x+ brit! Hope you like it here :) I am xmrv+ too, but no Brit :)
  5. x+ brit

    x+ brit

    thanks leaves, shame you're no Brit, you could've come to the protest on Monday!
  6. ukxmrv

    ukxmrv Senior Member

    Hi there, X+ brit,

    I'll see you at the protest. Has my XMRV+ result earlier this year. Welcome to the strange club of having a retrovirus!

See more popular forum discussions.

Share This Page