International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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VIP Dx Culture Test Poll For A LATENT Infection

Discussion in 'XMRV Testing, Treatment and Transmission' started by Cort, Nov 1, 2009.


What is the Result of Your XMRV Culture Test?

  1. I have severe ME/CFS: I tested positive

    11 vote(s)
  2. I have moderate to severe ME/CFS: I tested positive

    16 vote(s)
  3. I have mild to moderate ME/CFS: I tested positive

    3 vote(s)
  4. I have mild ME/CFS: I tested positive

    0 vote(s)
  5. I have severe ME/CFS: I tested negative

    10 vote(s)
  6. I have moderate to severe ME/CFS: I tested negative

    25 vote(s)
  7. I have mild to moderate ME/CFS: I tested negative

    2 vote(s)
  8. I have mild ME/CFS: I tested negative

    1 vote(s)
  1. ukxmrv

    ukxmrv Senior Member

    As soon as patients knew that there was something coming out of WPI we tried to find out about testing.

    As soon as the Science paper was released on XMRV the WPI and Redlabs (now VIP dx) were inundated from enquiries from patients begging for testing.

    I went in with my eyes open, knowing that testing was at an early stage and that there would false negatives. VIP dx and the WPI was upfront and answered all my questions. No one made me have this test or any of the other experimental tests I've paid for in the past.

    It's going to take years to sort out the testing side. Some of us will need to wait until biopsies or whatever method returns the best results are worked out. I don't think that the test was made public too soon, as we the patients asked for it. I asked for it and I am glad that it is available/being improved all the time.

    Yes, it is hard but I never thought it would be easy. We are at the start of something and in my opinion I am grateful to VIPdx for offering the test.

    I understand what you learned Jax and I really sympathise. I have also paid in the past for tests that in one way ended up to be relevant and/or the science didn't work out. I'm not rushing out for a spinal tap either.

    For XMRV, I wanted to know about this virus only, I didn't need validation, so in a different position. I knew that if I had a negative test then it could be years until I knew for sure what my status was (and that I would need to pay for retesting that I can ill afford).

    Hoping that we get a reliable test for XMRV and some treatment soon. It's the treatment that we need and the WPI is the place that it is most likely to come from.
  2. JAXintheCity


    Philadelphia, PA
    UKX - Thank you. This was helpful for me personally. And, I agree - I think it is better they offered the test, than not.

    I just wish we had more answers.... sigh.
  3. Linksey


    Wow, I didn't even send my medicare info to VIP, thinking it wouldn't do any good. Did you test positive? I would think if you did they would pay. I plan on sending them my info now. Thank you!

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