Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Discuss the article on the Forums.

XMRV Testing-FYI

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

  1. InvertedTree

    InvertedTree Senior Member


    VIP lab in Reno, NV has several test kits for, or related to, this
    virus. One is a PCR test for the XMRV virus itself. Another test kit
    recommend by Dr. Paul Cheney is the NKCP & LYEA test. Your local doctor
    can call the lab for information and can order the test kit(s) sent to
    directly to you. You can also call for pricing, which has been embargoed
    until the release of the paper. VIP Lab: 775-351-1890 answered 11am-7pm
    (CST) M-F.

    I called VIP Labs. Pricing for the test will be determined next week. I ordered a test kit. It takes about two weeks to get test results.
  2. MEKoan

    MEKoan Senior Member

    Wow! Is this test as accurate as it's ever going to get? Is there a point in waiting beside the fact that there is currently no treatment and, if I wait, there will eventually be a test which will be covered by my insurance?

    What to do, what to do?!

    I think I'll wait. I've waited 30 years; I can wait a little longer. And, anyway, I don't have any money so it's all pretty academic.

    I'll wait. Won't be easy. I'll wait.
  3. InvertedTree

    InvertedTree Senior Member

    Koan-good point about the accuracy of the test.

    I think eventually a test will be covered by insurance.

    My only reason for getting tested is in the hopes that my primary care doctor who is covered by my insurance might take me a bit more seriously if I show him the research and a positive test (although I'd rather not be positive for a retrovirus with the amount of cancer in my family).

    He specializes in HIV medicine so I'm hoping he can help me sort it all out. When I saw him for the first time last year he said he thinks I have either a slow virus or a retro virus.

    I'll let you know about the cost. If its too much money I won't be able to get tested. I think I have about $200 left in my savings account.

    I should wait and save that money I have but I got caught up in the heat of the moment...:)
  4. Aftermath

    Aftermath Guest

    Hold Off

    As excited as I am about this, my suggestion would be to hold off.

    If the WPI folk said that there will be a test in six months, I would wait for it.

    No sense in rushing now when there is no available treatment.
  5. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Thanks for posting. I can't find a comment there about having a PCR for XMRV.

    FWIW, the lead author on the Science article is Vincent C. Lombardi. The Medical Director of VIPDx is Vincent Lombardi. I wonder if they are the same person. VIPDx is in Reno, and WPI is nearby.
  6. MEKoan

    MEKoan Senior Member

    Excellent comments, all!

    Since I must wait, I'm very glad it may be the sensible thing to do.
  7. MEG

    MEG Senior Member

    Asheville, NC

    I too am conflicted about getting tested...not only the money, but do we know if this present test has a lot of false negatives or false positives? However, I am going to find a doctor who specializes in Infectious Disease..along with my Primary, who I love, but is a Family Practice physician.

    I hope for those who do get tested, they will let us know about their experiences.
  8. Dainty

    Dainty Senior Member

    I would also have questions about the accuracy. Quoting from one article:

    "That study showed a virus called XMRV in the blood of 68 out of 101 ME/CFS patients, compared to just 8 of 218 healthy people. Since the paper was submitted for publication, however, researchers say they've further refined their testing methods and have now been able to identify the virus in 95% of those same blood samples from people with ME/CFS, and in similar percentages of those with fibromyalgia and atypical multiple sclerosis." (Link)

    I wonder if this test is the "further refined" kind or not.

    Also, I know there's been media confusion about the unpublished 95% findings, whether those were just the antibodies or the actual virus. *shrugs* I suppose clarity will come in time....
  9. Kati

    Kati Patient in training


    Personnally, I want out of this disease. I called WPI on Friday, as per recommendation from Andrea Wittmore on the CFIDS facebook page. I want to be tested, I want to put the results on my dr's nose, I want to be seen by infectious disease Dr, and be treated with anti retro virals. I don't mind being a guinea pig, and at the least, I also want to be tested for CMV, EBV and HHV-6, and I certainly will send that the my insurance company who thinks I am inventing this disease so I don't go to work-

    I have been in it for just under a year, and I can't believe the suffering of people that's been at it for a decade or a few- It's unbelievable.

    Just my 2 cents, I certainly respect others' opinion, it's just that I'm in a hurry. I got a life to live.
  10. Aftermath

    Aftermath Guest

    XMRV Test

    If your financial situation allows it, by all means go forward.

    Still, if you have financial issues, it might be best to wait until WPI announces that the test is ready for primetime.

    After having spent tens of thousands of dollars myself on unproven treatments for this illness, with zero improvement. I have long told others to avoid wasting their money on doctor visits, supplements, etc until there is a peer-reviewed study demonstrating a treatment is effective.

    The bottom line is as of October 8, 2009, there was no known cause of this disease--let alone a cure that had been proved effective.

    It looks like the world as we know it has changed.

    I am not fully convinced that this is the magic bullet for all of us--or even a major subset. The transmission issue is certainly a big question mark (there are a ton of us who got sick as kids without any unprotected sex or exposure to blood).

    Still, the possibilities plus the publicity of the news combined with the WPI NIH grant looks like it is going to be enough to put things over the top.
  11. Kati

    Kati Patient in training

    Re: Experimental treatments, costs etc...

    I have spent no money on supplements or treatments so far, I am still waiting to see a specialist, if i'm lucky it will be December or January, but I don;t know the reputation of that rheumatologist in terms of CFIDS. I know she has a good one for disability.

    I just sent out my application for Dr Hyde in Ottawa- primarily because I want someone that know what's going on in research and it cost significantly less than for me going to the USA for treatment (I am in Vancouver) (3000$)

    I'd expect to pay something like 250-300$ on a XMRV ??? I may be wrong- I am certainly very curious to see if I would be positive. Certainly it would spark interests of the specialists here, maybe the virologists in town would start drooling all of a sudden- how often is there a new retrovirus in town???

    I would also expect it expedite my disability claim.
  12. _Kim_

    _Kim_ Guest

    Kati, I'm in a similar position. I've not spent much on treatments, so whatever the test costs, it feels justified. I was thinking the same price range as you. Guess we'll know soon.

    I wish you much luck with your new doctor and the disability process.

  13. Hi everyone.

    I had this positive reply below when asking about the test and questionnaire, from the WPI, and thought I should share it with you. I'm sure they don't mine me posting this as it seems a somewhat generic reply.

    ''Thank you for your interest in the Whittemore Peterson Institute and our new research findings on XMRV. We have been overwhelmed with both your encouraging comments and the volume of email and traffic to our web site.

    We are working this weekend on the patient response form for the research, and on an update on your questions about being tested for XMRV. Please check back on our website and we will provide more email answers as we have them.

    Thanks for your patience, interest and support.''
  14. Aftermath

    Aftermath Guest

    XMRV Test

    Thanks for posting this info.

    It is probably the understatement of the year. They have got to be absolutely inundated right now. Dr. DeMeirlier got crushed with patient requests following his H2S test announcement, and it did not get 1/100th of 1% of the press that the WPI release did.

    Most of the news articles are suggesting that the folks at WPI will be releasing/endorsing a test in the next six months. With no treatment readily available, again, I would hold off until we can get some info from Reno. I will talk to Cort on the phone in the next couple of days--perhaps he has a back channel for some info.

    Many of you may remember a similar situation two years ago when HHV-6 was the big thing following Dr. Montoya's announcement out of Stanford.

    People rushed out to be tested, yet many did not use the same lab (Focus) that Montoya was using. Comparison was very difficult, as all of the labs used different scales.

    Again, I know how tough it is to wait after being sick for 15 years myself.

    Still, getting a result (positive or negative) from another lab and then finding out that the scoring scales cannot be compared to the WPI data (extremely likely with antibody tests) is nothing more than a waste of money.

    PCR (which looks for actual segments of virus) should be easier to compare. I sent an e-mail to Viracor (considered one of the top labs for HHV-6 PCR testing) to inquire as to if they will be doing anything with regard to XMRV. I will keep you posted.
  15. MEKoan

    MEKoan Senior Member

    Hi Aftermath,

    I think you make a great deal of sense.

    Not only is there money on the line but, also, the potential emotional upheaval of questionable or uncertain results.

    Also, I would not want to involve a skeptical doctor in testing that was anything short of a gold standard as it might be hard to get them back on board if a better test comes along. Further, if any kind of disability insurance is involved I would not want a false negative in my history.

    We have all seen the many quarrels regarding labs those in the Lyme community have had to endure.

    Testing through WPI would be exempt from this caution, of course.

    Peace out,
  16. RestingInHim

    RestingInHim Realist

    Riverside, CA, USA
    makes sense to me! and i apologize for getting your name wrong in a previous post, Koan. :( but the thanks was, and is, heartfelt! :)
  17. citybug

    citybug Senior Member

    XMRV test

  18. liverock

    liverock Senior Member

    This virus is also present in (some?) prostate cancer sufferers.

    It could be asymptomatic in prostates for years before being activated into cancer.

    This means it could be transmitted through to us at conception if the latent XMRV passes from the prostate to the fathers semen.
  19. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

    Matlock, Derbyshire, Uk
    XMRV research results

    Dainty, you need to read the research info again and more carefully. The reason for the higher 95% figure in the subsequent, more refined testing, is that it isn't just the active virus that they are looking at in the blood. This figure includes those patients with antibodies to the virus in their blood (i.e. have been exposed to the virus at some stage in their lives and therefore produced antibodies to it) as well as those with the active virus.

    I think that it is our responsibility, when discussing and making comment on these important & complex issues, to make sure that we have read and properly understood, the minute details first.
  20. Finch

    Finch Down With the Sickness

    The biggest question

    This is the big question: Do I have XMRV or do I not have XMRV? All of us are certainly anxious to find the answer to that one question! The next question will be what to do with that answer once we have it.

    I honestly don't know which scenario is scarier. Having a retrovirus is certainly a frightening prospect, but at the same time I would finally know that I have that particular enemy.

    Not having it will leave me where I am now, which is trying to eradicate my body of a persistent chamydia pneumoniae infection using a "cocktail" of antibiotics and supplements. Would finding I have XMRV simply move me from one "cocktail" to another, or would I still need to treat the Cpn now that I've started that?

    I'm lucky in that I don't have anything to prove to either of my doctors. Both my PCP and my ME/CFS doctor have never doubted my diagnosis, and my PCP has been a believer in ME/CFS all along, which is why I chose him in the first place. I'm also fortunate in that I've been able to continue working (with much difficulty) and therefore am not having to fight to obtain disability. Therefore, I'm able to wait some time for a test to become approved and available to us all.

    I can certainly understand for those who need to know more quickly for personal reasons. My recommendation would be to try to get the testing through WPI. I wouldn't trust anyone else at this point. People like me should sit back and let those who need it more make the attempt through WPI, I think.

    One other observation is that if someone has been ill for less time, finding the answer to this question would probably feel more urgent. When I've had it already for 18 years, six more months waiting for a definitive test doesn't feel as long as it would to someone who's only been ill for a few years. I can certainly understand that.

See more popular forum discussions.

Share This Page