$399 to get the test done yourself?

Discussion in 'Fibromyalgia Main Forum' started by onset1990, Oct 26, 2009.

  1. onset1990

    onset1990 Member

    I can't afford that because I had to retire because of CFS. I'd like to do it privately, if I could. And soes anyone know if insurance companies are covering any testing for XMRV?

    But here's a link I found today...

  2. petemora

    petemora Member

    Cooperative Diagnostics Launches New Diagnostic Test for Chronic Fatigue Syndrome Associated Virus
    Posted on : 2009-10-26 | Author : Cooperative Diagnostics, LLC
    News Category : PressRelease

    GREENWOOD, SC -- 10/26/09 -- 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 Diagnostic's 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.

    CRL's Executive Director of Molecular Diagnostics, Dr. Heather Newkirk, said, "This unique technology from Cooperative Diagnostics enables a powerful detection product which synergizes well with CRL's 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.

    Cooperative Diagnostics, LLC
    117 Gregor Mendel Circle
    Greenwood, SC 29646
    (864) 229-1567
  3. marley69

    marley69 New Member

    who else will have this done asap?....really hoping this reveals something!
  4. denis321

    denis321 New Member

    I'm glad that there is a test available for the public and hope there will be more soon.

    However, I would be wary of spending $399 on this test until it is verified. Unless of course, you don't care about the money and can afford to have further testing later on. (It's going to be a while before insurance covers - most need more proof.)

    There are many tests that are available for CFS but my perception has been that they've not really been subjected to rigorous examination.

    Usually new tests are tested against a gold standard test which might be more expensive, less available, or more complicated to get but is more or less 100% accurate for diagnosing an illness. For example, mammograms for breast cancer were originally tested against breast tissue biopsies. For XMRV, the gold standard might be ability of patient serum to newly infect uninfected blood cells with XMRV - I don't know for sure as I'm not a virologist.

    In any case, a test should come with sensitivity and specificity calcuations - which I currently don't see on the site. Sensitivity refers to how well a test gives a "YES" result to people who actually have the disease while specificity refers to how well a test gives a "NO" result to people who don't have the disease. If sensitivity is not high (highest = 100%), the test can have a lot of false-negatives. If specificity is not high, the test can have a lot of false-positives.

    And at this point, even if you are positive, there aren't good medicines out there for it yet. Yes, it could give peace of mind and you could work on doing things to help your immune system but many people are doing that already.

    I want to see the sensitivity/ specificity/ gold standards for this test. Otherwise, I will wait for the WPI to give their endorsement to a lab/ test.

  5. TigerLilea

    TigerLilea Active Member

    I'm waiting until the testing is available here in Canada. I would imagine that if XMRV turns out to be important to CFS, then our local labs will make testing available and that the cost would be covered by our health care.
  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    At this time, I don't see the point for me to get the test. I am working on the assumption that I have it. I have CFS and 95% of people with CFS have the virus.

    As was already said, I'll just do what i can for sleep (to help my immune system), take supplements for my immune system and avoid stress which also hurts the immune system. I still want to understand if the cortisol I am taking encourages growth of this virus.

    Now, does this test distinguish between the virus being active or whether the person has the antibodies because of being exposed, but the virus is currently dormant?

    When insurance pays for it, I do think it would be important for my husband to get tested.

    [This Message was Edited on 10/26/2009]