1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

My VIP XMRV results

Discussion in 'XMRV Testing, Treatment and Transmission' started by sleepwalking, Feb 5, 2010.

  1. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,261
    Likes:
    1,627
    London
    Looks like they changed that final question on their Q&A sheet

    This is the last question on my copy (was with my results)

    Q: Is there a serological test available at this time

    A: We are currently developing a serological test and this test will be added to our existing test without any charge and will be offered to all clients who previously had testing at no additional charge

    (I have typed that in so there may be the odd error as bad eyes today)
  2. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    This is great news to those who have tested negative. I thought I heard Dr. Mikovits say this at the ProHealth lecture but it's good to see it officially in writing.
  3. Koan

    Koan Be the change.

    Messages:
    2,596
    Likes:
    53
    Hey Sleepwalking,

    I would be so confused if I were you. Dr M. has spoken about the elusive nature of the virus and the problems re testing at the moment. It would be good (bad?) / better (worse?) ... ahhhh... more definitive if your test was positive and you could get on with digesting that piece of information. Or, if we knew that negative was, for sure, negative. More uncertainty would be so hard, I think.

    Please remember that you are not one lonely person off alone. We have no idea how many of us will test negative with culture. We do know that you are not alone even on this forum. We don't know why. It's like a crazy curse, huh? It's like Cassandra!!!

    As someone who cannot afford testing I am so grateful to all you brave pioneers! This is probably cold comfort but you make it a little easier for the rest of us to cope with the process. Thank you for blazing the trail.

    We are with you!

    :hug:
  4. Kati

    Kati Patient in training

    Messages:
    1,813
    Likes:
    855
    Koan, every patients that have been at this since the 1980's the 1990's and the last decade are true heroes and deserve a medal of bravery for hanging in there so long, with so many losses, denial of rights, lack of care and resources. You are all my heroes and thank you for guiding me into this.

    Kati aka patient in training. XMRV pending.
  5. Koan

    Koan Be the change.

    Messages:
    2,596
    Likes:
    53
    .........

    :hug:
  6. SunnyGal

    SunnyGal Senior Member

    Messages:
    147
    Likes:
    0
    Thanks for posting this. Does this mean they'll run the serological test for all clients who have previously had testing, even if they were positive? I was + for both PCR and culture. Just trying to understand if I should look for them to run the serological test on my blood as well when that test is available. Any thoughts?

    Thanks!
  7. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,261
    Likes:
    1,627
    London
    Sunnygal,

    I think that the answer is yes. However, you will need to check with VIP. When I asked they agreed to do so (I have a particular reason that I don't want to make public here sorry). They said that I would need to sign another type of form and that it would not be for about 2 months.
  8. SunnyGal

    SunnyGal Senior Member

    Messages:
    147
    Likes:
    0
    Ukxmrv, thanks so much for the reply. I will definitely check with VIP Dx to verify.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    My memory is not good folks. But didn't Mikovitz say she had to take multiple blood draws because it hides? And that is why the antibody test is considered more reliable?

    On a side note, isn't it awful at a time when we have reduced energy and mental ability, we have to learn all this stuff that scientists learn? It's like an Alzheimer's patient suddenly having to take a lot of medicine when their memory is failing.

    Tina
  10. bakercape

    bakercape Senior Member

    Messages:
    210
    Likes:
    1
    Cape Cod. Mass
    I'm sorry you did not get he definitive answer you were looking for in this round of testing. I know what you mean when you just want an answer to why you have been ill and for so long.

    I do agree that a negative result now could be positive latter so I wouldn't give up on the XMRV virus as an answer to your being ill.

    I wish you well and hopefully we can all get an answer to why we are being put through this hell.
  11. SunnyGal

    SunnyGal Senior Member

    Messages:
    147
    Likes:
    0
    Just wanted to update that I contacted VIP Dx and they said that the serology test would be run for free for patients who have previously tested negative for XMRV with VIP Dx.
  12. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,261
    Likes:
    1,627
    London
    Thanks Sunnygal,

    Lots of people will be happy to hear that.

See more popular forum discussions.

Share This Page