Friday, January 21, 2011

The XMRV Hunt and Me

26 Feb 2012 Edit: Much has changed since I wrote this article. The WPI is discredited, though XMRV or similar retroviruses are still under investigation. Biomedical research on ME and other neuro-immune diseases is still urgently needed, but I do not advise donating to WPI unless they are able to repair their reputation. And now, the post as originally written...

Recently I got the results from my XMRV serology test: no evidence of antibodies. This does not mean I'm XMRV-negative: it just means that antibodies to the hard-to-find retrovirus did not show up in that particular sample of my blood. It may be that my immune system was so down, it wasn't producing the antibodies just then in sufficient quantities to be detected.

When I first got the results, I felt deflated. My hope had been for a positive test, since that would give me some understanding of the cause, and perhaps even guidance towards possible treatment, of a disease I've now had for nearly four years.  But when I talked to other patients about it, they pointed out that this is only a setback and not a dead end.

They pointed out that some patients have encouraged the antibodies to show up by taking a short course of something (hormones for example) that would encourage the retrovirus' activity, briefly. Yes, patients are that desperate for an answer, risking a period of more severe illness to insure test accuracy. XMRV is good at hiding, and the trick is to lure it out.

They pointed out too that often it's the sickest patients who turn up this "no evidence" result in serology. It seems a harsh irony that the same thing that makes me spend many days bedridden and most days housebound, also makes me get this test result that, at first glance, looked like a dead end. I could be chock-full of gleeful little retroviral cells, proliferating cheerfully while I sustain damage to my central and peripheral nervous systems, cardiac and other functions. And here am I, so unable to produce antibodies to fight them, their presence doesn't even show up in serology.

Or maybe what I've got is really something else: heavy metals contamination, Lyme Disease or a rare leukemia. Of course any of those could be present alongside XMRV. It would be good to know. My new GP and I are getting what tests we can, for other possible pathogens. Some have been tested and re-tested for, while there are others that my previous doctors didn't hit.

Meanwhile, my XMRV options now: get retested in six months with the same serology test, opt for the more expensive virus culture test, or, being broke, try again to get included in clinical studies. I was actually told by a leading researcher that my two children and I were definitely on the list to be included in studies at the WPI, the research institute where XMRV was first found in ME patients. So exciting! But alas, that was two years ago. Since then, with the denial of six applications for public grants, the shortness of research funds has slowed progress at WPI, so we continue to wait to be included.

My personal hunt searches my own blood and that of my kids, for the pathogen that makes us so ill for so long. The greater hunt is worldwide, for research funding, and the truly great hunt is where those funds will be put to use: To explain the pathogenesis of XMRV in ME/cfs,  Fibromyalgia, Cancers and more. To identify antiretrovirals and other medicines most effective in controlling the retrovirus. To get those medicines approved for use in the patient population. To bring effective treatment to 17 million people and make it less likely that even more will become ill.

You can help in the hunt, and thereby help me, my kids, and the rest of the 17-million sufferers worldwide, by supporting the WPI ...

You can help by contacting the congress if you're a US resident or contacting whatever elected officials you can wherever you are---Ask them to support XMRV research ...

You can also help by blogging. Whatever the usual topic of your blog, please consider devoting one post to this cause, helping spread solid information.

Thank you.

This post is part of XMRV Bloggerama: a day's effort to get the truth out in bulk. Details are available here, with a template for those who find it hard to blog at all, and lots of links you can include in your post.

Finally, here are links to the science on XMRV.

WPI press release, Oct 2009

Lombardi et al, Oct 2009, Science Magazine

Lo et al, Proceedings of the National Academy of Sciences, August 2010

Commentary on Lo et al, PNAS, August 2010

FAQ on XMRV testing from VIP Dx lab

19 comments:

  1. Kassy, hang in there, help is coming!

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  2. Thank you, Kassy. I know exactly how you felt when you got your negative XMRV results back. It was very deflating (defeating) for me too. I was tested through Dr. Singh's research and very few people were positive...so that in itself made me feel the testing wasn't the same as WPI. Looking forward to more improved testing. Thank you for extending your precious energy on your blog...

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  3. Hey, Kassy. Thanks for blogging today. I know how hard it is. I always love reading what you have to say. I love the way you express yourself. I spend most of my time in bed, too. I tested negative for serology, but positive by culture. I'm sure that you would, too. It's all such a mix of emotion. Positive or negative...how are we supposed to feel?
    I send you love and peace. That is what you deserve.

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  4. Thank you Kassey for writing such a personal piece along with adding all the links to excellent and accurate information on the matter of ME/CFS and the XMRV human retrovirus.
    You touched on the expense of getting retested. This is why we need the governments to step up to the plate and fund not just research but researchers who know what a 'replication' study means. And we need an accepted proven assay so the insurance companies will pay for testing on all of us patients who have been reduced to living in poverty on disability. If they would do this as well as figure out what XMRV does in the human body we could get somewhere.
    Pat thank you for sharing your experience as it highlights the very necessity of the culturing when testing. How heartwrenching it must feel for those who took their precious few funds and only got the serology test, who now are sitting exactly where they were before....wondering....sick as a dog and wondering. We need to KNOW!!! We need funding!

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  5. I understand what you are going through Kassy, but I cannot imagine how hard it must be on you as a mother of children with ME/CFS.

    Kassy, if you are going to do lyme and co-infection testing, please consider using IGeneX as the lab to do the work.

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  6. Thanks for blogging today and sharing your story and your thoughts!

    Big hugs from Norway

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  7. Thank you, Kassy, for sharing. Here's hoping for increased awareness and funding, so all of us can have the answers we so desperately need.

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  8. If the retrovirus ends up being the cause, then the WPI scientists deserve the Nobel Prize.

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  9. I'm sorry your wait to be researched has been so long. I would agree that negative antibodies don't mean negative for this terrible retrovirus. I have been part of the XMRV research since the original 101 Science study patients so I've had multiple blood draws. Though I am very clearly positive by serology, I'm often to sick to produce antibodies though we have found them in me at least once.
    Thank you for joining the effort to help educate the world for the need for further research and funding for the Whittemore Peterson Institute as they bring us hope not only for CFS but for other neuro-immune illnesses as well.

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  10. I'm a fellow M.E sufferer and relate fully to the frustrations and complications of this illness... and the desperate need for awareness and funding for research. Thank you so much for your blog.

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  11. Hi Creek!
    Thanks for your blog.
    If ME wasn't hard enough we are now facing the possibility of difficult-to-interpret XMRV results. I believe the XMRV science will go forward. It is always too slow, I know.
    Being an ME sufferer myself I haven't had "The Test" yet so I am reading your story with great interest.

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  12. Thanks for blogging today, Kassy. We shall overcome!

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  13. A clear explanation of why XMRV tests can turn out negative - a friend who was recently tested also showed up negative and was, I think, disappointed. It's certainly an expensive business, being sick with this disease!

    Do you have any further information, or any links to information, about why the WPI is being repeatedly turned down for research funds? This is a scandal, and I'm wondering if there's anything the patient community can do in the way of appropriate advocacy that wouldn't just cause more trouble for the WPI.

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  14. We need the vital research into XMRV and the link to ME/CFS that is being carried out by WPI

    Paul.

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  15. Creekfeet it has been a while it is Puppy from Alaska, I have followed your blog and am still doing my research and writing my papers and calling those that will listen. heres my blog link ravepuppy.blogspot.com

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  16. Great Blog! Thanks for sharing your story and thoughts with us all.

    And yes, I agree with Tina that if WPI proves that the retrovirus family is key or large part of the key to cancer - Nobel Prize. And millions and millions of very happy people. That would be sooo wonderful. Support WPI!

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  17. This does seem to be an unusual virus. It seems to be very hard to find and be active, then go into dormancy. While this virus may cause much of ME/CFS, how many other yet-to-be-discovered retroviruses are causing immune system disorders? Do we know for sure about the DeFreitas virus?

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  18. So many questions but the big one is, why isn't research getting funded? Why is the general public not making an outcry for funding to find the cause of a debilitating disease that's clearly infectious, has already made millions sick and continues to spread? They get scared about swine flu and not about ME/CFS?!

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