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XMRV Testing-FYI

Discussion in 'XMRV Testing, Treatment and Transmission' started by InvertedTree, Oct 9, 2009.

  1. Kati

    Kati Patient in training

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    :(
  2. Koan

    Koan Be the change.

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    Nancy Klimas in today's NYTs on testing for XMRV

    Q.

    Is there a specific test, blood or other, to determine whether a person is infected with the XMRV virus?
    Beau Brincefield
    A.

    Dr. Klimas responds:

    The test for XMRV that has been reported is currently used only in research settings. The research director of the Whittemore Peterson Institute, which was involved in the recent findings, was quoted as saying they were developing a commercial assay that they expected to be available within weeks. Several other commercial laboratories are also developing assays.

    Some important points: First, antibody tests mean you have been exposed to a virus and do not tell you actually have an active infection. Second, a technique known as P.C.R. assays measures something called viral load, and the assay is designed to measure either active replicating virus or latent (inactive) virus. Either measure would be helpful with this new virus, but we dont have access to them except in research settings.

    Another way to see if you are infected is with viral cultures. The recent study published in Science used both cultures and P.C.R. assays.
  3. Min

    Min Senior Member

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    cold taste of tears, write your appalling story to the newspapers - ask them to publish it anonymously - the Independent might do so
  4. Jessrose21

    Jessrose21

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  5. Advocate

    Advocate Senior Member

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    To Cold Taste of Tears, in reply to your Post #39 on the XMRV Testing-FYI string,

    What a stunning and sad tale you have told. I am so sorry these terrible things have happened to you. Hang on. I, too, think the XMRV test might save you. (In the meantime, stay away from doctors.)

    If I had seen your post sooner, I would have encouraged you to send it to our CFSAC.
  6. I am a pariah. Bring on the XMRV test.

    I pray so. I pray for vailidation, and yes, XMRV testing may even gain us access to meds and to doctors.

    Though I never expect to be well, fear I shall die of this illness, I crave a bit of respect, and I want the abuse to stop. My story is a lot like cold_taste_of_tears' story. And I weep in self pity to this day when I read the stories of people who have money to buy decent health care, to access concierge/boutique medicine. I wish these patients well. I know they suffer. And I know that their experiences are good indicators for the rest of us per what helps a bit and what does not. Someone has to go first. It usually IS the monied. I just want the same treatments. I am tired of being abused. I am tired of not even being able to find any doctor at all who feels a need to do more for me than prescribe psych meds ( which I do not tolerate), or give me a psych referral.

    Once, I deliberately moved in with a man with HIV who needed a roommate. I did not know him, had never met him. But... we were both desperate. This was so I could live in a town that had a physician offering cleocin IVs and other supportive meds/treatments for CFIDS. I got better on his protocol...not well, but I felt a bit better. I could get out of bed.

    Then, though my doctor had accepted Medicare initially, he suddenly dumped all his Medicare clients. Dumped...out on the street. No big money= no help. Period.

    It was almost impossible to find another doctor who would accept me as a patient. I am a pariah. I am tired of this status in society.

    Yeah. Bring on the XMRV test.
  7. Bev

    Bev Guest

    I heard the price (right now) is unknown and you have to order without knowing the cost (if you want to be tested right now)---I've heard quotes of 1000 to 2000 dollars or more. So who knows? I'm waiting.

    Regarding disability process: as we know, we don't need a positive XMRV test to qualify for disability. If anything, too, this illness is a teacher of patience. Even if you have none at the beginning. NEVER EVER did I think I would have this illness this long----I thought the cause and treatment would be found years and years ago. There was no doubt in my mind.
  8. Tony

    Tony Still working on it all..

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    LA Times blog

    An important point from that blog: Dr. Robert Silverman of the Cleveland Clinic Lerner Research Institute, who originally discovered the virus, noted that the techniques used in Germany to look for the virus "are significantly different from the methods we use.... It is possible that the methods used may have missed detecting XMRV."
  9. Alice Band

    Alice Band PWME - ME by Ramsay

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    The Independent newspaper in the UK, said in an article on the new virus that 500 samples from London had tested and were positive.

    The questions we are all asking is where were they tested, what samples were they and how?

    Although the Lab in the USA has not been positive about accepting samples from London (they told me to ask them again in a few weeks) there is a similar Lab in Belgium. No ansa to my email as yet and I've not been well enough to call them.
  10. Andrew

    Andrew Senior Member

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    I was told by VIPDx yesterday: They won't be ready to run these tests until next week. They won't know the price until next week. They will be sending out only 20 to 30 sample kits a week.

    I assume this can change as they go along. I'm not going to order one until I know the cost.
  11. I replied to people here privately and my messages dont' show up as sent in the outbox thingy?

    I hope you guys got them, if not. Then I thank you all for such kind words and support, I really do appreciate it.
  12. Tony

    Tony Still working on it all..

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    Melbourne, Australia
  13. firbopt1997

    firbopt1997 Guest

    Hello all. I have been watching the posts for a while and wanted to join in on this amazing topic and discovery. I have fibromyalgia & rheumatoid arthritis and I suspect CFS but have never been diagnosed. This discovery is amazing. I called VIP Dx today to get put on their list for an XMRV kit and they finally have pricing available. The woman on the phone explained that they are using and licensing the same technology as the Whittemore Peterson Institute. They have two ways they are testing for the virus. One is by PCR for active infection and that one is $400. Another is by virus culture for latent infection and that one is $500. Or you can get both the PCR and virus culture for $650.
  14. Kati

    Kati Patient in training

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    Thank you for sharing- a bit pricy but in my opinion worth it-
  15. Martlet

    Martlet Senior Member

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    :eek: I'd have to save up for quite a while to afford that.
  16. Kati

    Kati Patient in training

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    Maybe you could enroll in the next study they will do- keep your eyes open- then you would be tested for free.
  17. Aftermath

    Aftermath Guest

    Testing Fees

    Thanks for posting this. Prices don't seem to be too out of line from what other labs are charging. Viracor charged over $1,000 for viral testing of my CSF (all negative).

    Luckily, my insurance company picked up the bill. I assume that as this test gets established, insurance will start reimbursing for it as well.
  18. fairlight

    fairlight

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    Levi-I think that's a great question..

    Where are all the people who tested positive? Has anyone heard from them? I wonder what treatment they're getting.

    I assume they're out there. Hopefully someone with a positive xmrv test result will share with us soon.
  19. Aftermath

    Aftermath Guest

    Notification

    I'm not sure that they notify the patients in the trial.

    Cort and I were both participants in the Georgetown proteomics study. The criteria made it clear that we wouldn't be notified if we were positive for the malformed proteins--and this study required a very painful spinal tap.

    I almost refused to participate because of this. Even when it was explained to me, I don't think that the folks at Georgetown (as nice as they were) justified the withholding of this information.

    Going forward, as a patient group, I think that this notification is something that we should demand after studies become unblinded.
  20. Alice Band

    Alice Band PWME - ME by Ramsay

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