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XMRV test by Cooperative Diagnostics

Discussion in 'XMRV Testing, Treatment and Transmission' started by imready, Oct 26, 2009.

  1. imready

    imready Guest

    Has anyone heard of Cooperative Diagnostics? They have a test out for XMRV it seems easy enough. I'm on a waiting list with WPI and haven't heard anything and VIP DX website doesn't have any thing new on there about testing.

    http://codiagnostics.com/XMRV/order.php
  2. Thank you for posting this, we are all scratching at the door like rabid dehydrated dogs to get ANY help. Anything that verifys our suffering is a bonus.
    I phoned VIPdx (Red Labs USA) here in UK and they said the test is only licensed for USA and Canada.

    :(

    I'll keep banging on the door though for the 'proper' test and until then, this DNA test (finger prick) you have found us at Cooperative Diagnosticsis a good basic start.

    It's $400.

    It won't confirm XMRV for any medical or insurance purposes, however, one should not have XMRV in a DNA sample, and this
    is what the test is for.

    A good start I reckon?

    :)
  3. _Kim_

    _Kim_ Guest

    Not the same test as VIP

    Hmmm, for $399, a finger prick's worth of blood can detect XMRV?

    There is an Oct. 24th press release on their website:

    Cooperative Diagnostics Launches New Diagnostic Test for Chronic Fatigue Syndrome Associated Virus
    Greenwood, SC, Oct 24th, 2009 Cooperative Diagnostics, LLC announced today the availability of a new diagnostic assay for Xenotropic Murine Leukemia-Related Virus (XMRV) to assist physicians in the diagnosis of Chronic Fatigue Syndrome and other disorders potentially caused by the virus. Testing services will also be made available to the general public. The Simplex XMRV test identifies patients infected with XMRV. XMRV has been recently identified in 95% of Chronic Fatigue Syndrome patients, in addition to large numbers of patients with Fibromyalgia, Atypical Multiple Sclerosis, and other clinical conditions. Cooperative Diagnostics XMRV assay is the first diagnostic for the virus to be made available to the public.
    This may well be the fulfillment of a promise that I made a number of years ago to two good friends, who both became ill from Chronic Fatigue Syndrome. I saw firsthand the mental anguish they endured by those closest to them including the medical community as they were told their condition could be psychological, said Brent C. Satterfield, Ph.D., President and CEO of Cooperative Diagnostics, LLC. When we learned that XMRV might have such a high association with Chronic Fatigue Syndrome, we immediately became
    interested in developing a test. Now, my two friends and everyone else who has suffered from the condition can take testing for XMRV into their own hands.

    The Cooperative Diagnostics XMRV test is based on its proprietary real-time PCR nucleic acid detection technologies. It is capable of detecting the virus inside of blood cells. The test is available to the public at www.codiagnostics.com/XMRV/index.php for $399.00. In order to provide quality testing in a high throughput environment, Cooperative Diagnostics has contracted Clinical Reference Laboratory, Inc. (CRL), to process these assays.
    CRLs Executive Director of Molecular Diagnostics, Dr. Heather Newkirk, said this unique technology from Cooperative Diagnostics enables a powerful detection product which synergizes well with CRLs expertise in offering quality molecular services. We look forward to working with Cooperative Diagnostics to provide
    quality services.

    About Cooperative Diagnostics, LLC
    Cooperative Diagnostics, founded in January 2008, brings the most advanced molecular diagnostics to the people and nations that need them most. For more information visit www.codiagnostics.com
    About Clinical Reference Laboratory, Inc.

    Established in 1979, CRL is a privately held reference laboratory in Lenexa, Kansas offering leading-edge testing services in the areas of Clinical Trials, Molecular Diagnostics, Insurance, and Toxicology. CRL is one of the largest singlesite laboratories in the country and analyzes over 80 million tests annually. Additional information is available at www.crlcorp.com

    SOURCE Cooperative Diagnostics, LLC
  4. cfs since 1998

    cfs since 1998 *****

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    Seems fishy to me. VIP Dx uses the same technology the WPI used in their studies so I'll stick with them, as the cost is the same anyway. While finger pricking seems convenient I don't see how that can be enough blood.
  5. I agree, but in the UK we are screwed as VIPdx won't let us have the test.
    If i was in the states, I'd wait like you said though. :)
  6. Aftermath

    Aftermath Guest

    Wait

    Guys, I would wait on this one.

    Looks like this test is PCR only. If I were going to do it, I would want to do it all the way. You definitely wan the antibody testing as well.

    Finally, with regard to the UK, hang on. Again, at this point, we are not even sure on an effective treatment.

    I'm sure that if the findings are replicated, a test will come to the UK very soon.

    Personally, I'm holding off until the New Year when somethings are ironed out.
  7. Cort

    Cort Phoenix Rising Founder

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    VIPdx is offering the PCR test and the culture test. VIPdx is run by the lead author on the Science study - Vincent Lombardi - definitely stick with them if you can. We really need guidance from the WPI on this.
  8. imready

    imready Guest

    I'm waiting

    I'm going to wait to hear from the WPI and follow where they suggest I be tested. It's just strange that Cooperative Diagnostics came up with a XMRV test faster than WPI and VIP dx labs, even though Cooperative Diagnostics XMRV test isn't a complete test on XMRV or not as complete as I believe that the one WPI will be putting out via a lab they contract with. I'm sure that WPI will want to track all the results that come in from the lab they contract with. I'm wondering if that's the hold up are they trying to get a program in place to track these test? Are they having problems with getting a contract with a lab that would allow access to the results?

    To me it just seems so simple as I lay here flat on my back typing away.
  9. imready

    imready Guest

    Cort-Vip labs

    I have looked everywhere on Vipdx website for the pcr and culture test and I can't find them anywhere. I'm in complete agreement that we need guidance from WPI. I'm on there waiting list to be tested but haven't heard from them. I was under the impression that they were going to contract with VIPdx for testing. But then i've been hearing that VIPdx is sending out test kits, which makes me believe that WPI isn't going to use them. I wish that WPI would update there website and say either they are getting closer to a available test or ?????
  10. Cort

    Cort Phoenix Rising Founder

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    This is what the WPI said about testing in their Q&A

    No word on which lab to use. (gotta change my website!)
  11. InvertedTree

    InvertedTree Senior Member

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    This was posted by the Whittemore Peterson Institute on their Facebook page tonight regarding this particular company's test:

    "The WPI knows nothing of this test and does not recommend it's use or Lab . We will be contacting CRL Lab as well as Cooperative Diagnostics and addressing this on our main website"
  12. Aftermath

    Aftermath Guest

    Hold Off

    Guys, I know that you have been sick a long time and that you really want answers. It has been fifteen years for me.

    Still, once again, I would urge everyone to hold off.


    Labs are going to be jumping on the bandwagon in an effort to make a buck. Unless you get the test that meets the WPI standards, you are literally throwing your money away.

    First, let me preface by stating that I am very optimistic on the XMRV thing. I am hoping more than anything in the world that it pans out... Still, as of right now...


    • [*]Follow Up Work Confirming a Correlation w/ XMRV has yet to be done
      [*]There is No Evidence Whasoever Showing a Causal Link
      [*]There Are Currently No Treatment Options Available

    I really hope that a year from now, all of the above questions have been answered in our favor.

    Nonetheless, I am holding off until at least the first of the year. I strongly suggest that others do the same.
  13. Alexia

    Alexia Senior Member

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    Test in Europe

    For people in Europe: I've send an email to the Red Labs in Belgium and their reply was " We are currently discussing this (having the test in Belgium), I hope we will be able to provide testing, or collect samples for testing, within a few weeks.
    Best regards,"
    So we better wait until there is a valid test.
  14. liverock

    liverock Senior Member

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    I agree Aftermath, people have to ask themselves, if I get tested and am positive how will things change for me?

    Most PWC's have little money, is the test going to be worth the money?

    #If you get XMRV, and are positive -- how is that likely to change your treatment regime?

    Researchers are looking for treatment answers in connection to the XMRV prostate cancer link, but there is no treatment at the moment. There is speculation that HIV drugs may help --but that is pure speculation and those drugs are known to have severe side-effects (which are warranted given the very short life expectancy with HIV, but the risk may not be worth it in the case of CFS).

    #If you get XMRV, and are positive, will it impact disability claims or payments?

    No, the research is too new and needs independent validation before any court or insurance company will consider it..

    #If you get XMRV, and are positive, will it change your non-CFIDS MD or family attitude to you?

    Probably not until it becomes "commonly accepted", that means a series of published reports from different sources.

    Personally I'm prepared to wait and see............
  15. PoetInSF

    PoetInSF Senior Member

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    That does sound like a price from a late night infomercial with Billy Mays, doesn't it? "If you call within next 5 minutes... we'll throw in a Ginsu knife set for free!"
  16. Aftermath

    Aftermath Guest

    Agreed

    Nothing is likely to change in the next six months, even for those who have the proper test designated by WPI. To stab at a discount test for viral RNA only (not antibodies as well) from a lab that appears to have jumped on the bandwagon is beyond silly.

    Personally, I plan to be tested for XMRV, but I am waiting until approximately the first of the year until some things shake out.

    One other thing to think about is the impact of a positive test for XMRV on one's medical records. In particular, how will it impact the ability to acquire health insurance? Right now, it's probably not a big deal as no correlation has been proven. Still, within a few years, if a connection is made, those positive for XMRV may well get blacklisted when shopping for health insurance.

    For those with the ability, it might be worth it to pay cash for this one.
  17. Frickly

    Frickly Senior Member

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    xmrv testing

    I think things will change a great deal if I am tested positive for XMRV. I saw my doctor yesterday and she said that she thinks they will find that XMRV is the cause of CFS or closely linked. She said that it dosn't matter which because there will be new treatments for us. She also treats HIV and showed me a list of about 40 antivirals that she uses for her HIV patients. She thinks that they have the potential to help us and that her HIV patients are doing very well, it is her CFS patients who are a challenge. She will start giving this test to her patients as soon as it is available and I will be the first in line. I do agree that we should wait for the real deal rather than, potentially, throwing our money away on unproven tests.
  18. kurt

    kurt Senior Member

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    This is a valid test

    I happen to have a relative who went to college with the founder of Cooperative Diagnostics, Brent Satterfield, and knows him well. The company and the test are legitimate, they are using a proprietary rapid PCR test that is merged with a real-time analysis of the DNA in order to identify even slightly mutated versions of a retroviral pathogen. I do not know how this test will work out in the marketplace, but Dr Satterfield is a very credible Ph.D. Bio-tech engineer. He mentioned to my relative that when a retrovirus hits our DNA it is like a shotgun blast, and whatever area of DNA is targeted gets damaged, in CFS he believes XMRV may be targeting immune genetics. He also said that the 95% finding in PWC combined with the small finding in the controls is HUGE, and points to serious causal factors, given how retroviruses work.

    I suspect this may become a very important test for validating the WPI finding. In fact, Dr Satterfield said his lab is working with a third party to replicate the WPI findings right now. Since this test uses a different technology than WPI, a positive finding could be very helpful in verifying that XMRV is involved in CFS. So while I agree that it might be wise for some people to wait awhile before spending money on tests, for those who can afford it, supporting this test, or some other test (any XMRV test really) may be important, in generating numbers for replication of WPI's findings. Probably there are quit a few researchers and entrepreneurs out there right now trying to replicate this, and many will not be known to WPI at first, so that does not mean much at this stage of events.

    I do agree that the cost ($400) is pretty high for low-income patients with poor insurance for CFS (is there any good insurance for CFS?). So I have asked Dr Satterfield about the price and will let the forum know what he says.
  19. garcia

    garcia Aristocrat Extraordinaire

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    Thanks a lot for that Kurt. I'd also like to know if (after a while of testing) they will disclose what kind of percentage they are finding positive in their patients. This is really the key question in any commercial test - how likely is the test to find XMRV?

    I spent $300 on a PCR test for Chlamydia pneumoniae a couple of years ago which came back negative (despite me having the disease). Subsequently I found out that the lab had never ever found a positive in a single CFS patient!! I wish they had told me this before testing. :rolleyes: I really feel like I got ripped off with that test.
  20. Advocate

    Advocate Senior Member

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    So what we need is some people with money to burn who will send specimens to both labs. One of the Lyme doctors used to do that, to see if the labs got the same results.

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