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A Light in the Darkness: Good News Ahead for XMRV?

Blog entry posted by Cort, Mar 26, 2010.

View attachment 671 A month ago the head Dutch researcher, Kuppeveld, stated that he considered XMRV story over. After what he described as an intense effort to find the virus failed he was folding up shop on it; there would be no more XMRV studies coming out of his lab.

No papers have been published since then but it appears that a decidedly different story is brewing in Utah. We had heard that the three dozen or so people who participated in the Lights fascinating exercise study were brought back to get tested for XMRV. What we didnt know is that that study has recently been expanded - greatly. Since one thing researchers do not do is repeat negative studies, the only logical conclusion we can draw is that enough CFS patients tested positive for XMRV to make a greatly expanded and obviously much more expensive study worthwhile. These patients, and we don't know how many were positive, appear to be the first patients whove tested positive at an independent laboratory. The XMRV story may be over in Holland but it appears to be gathering steam in Utah.

Luckily, CBS, a member of the Phoenix Rising Forums is participating in the new study and was willing to give us some insights into what's happening. First the new study consists of about 100 CFS patients, hand-picked by Dr. Bateman, and about 200 healthy controls. Dr. Light appears to a major fundraiser for the study - plucking money out of every corner he can. Dr. Singh, a noted retrovirologist already steadying XMRV in prostate cancer, will supervise the analysis of the samples. ARUP - the research laboratory associated with the University of Utah - is providing facilities and manpower.

When CBS showed up for his blood draws he stepped into a highly professional environment. He signed in and rounded the corner to find a hallway full of techs with stopwatches. As each of approximately 6 vials of blood were drawn, the gloved phlebotomist immediately handed it to a gloved tech who set his/her stopwatch and hustled out of the room to the next location. The collecting receptacles were swabbed with alcohol after each patient.

Dr. Batemans role in this is interesting. Her video presentation about XMRV several months ago was notable for her sober approach to it is and she appeared quite concerned about how well her patients matched up with the apparently immune dysfunctional patients in the Science study. Although we can't know for sure it appears that something has changed in her outlook on XMRV. She stated that all parties were working around the clock on this.
These researchers moved fast - it took them about a week or two to process get several hundred samples. Theyre doing PCR, antibody and culture tests. CBS expects to get his results in about eight weeks and the researchers are banking blood as well - so expect more studies to follow this second study if it works out well.

View attachment 672 ARUP is by no means an ordinary lab. Employing 2,400 people it is a national reference laboratory that specializes in innovative laboratory research and development. The website states that ARUP chooses to provide "highly complex and unique lab tests" The Light/Bateman/Singh/ARUP team will not be looking at one sample multiple times or testing multiple samples from one patient to get one positive result. Nor will they accept dim bands on the PCR as positives (a critique given to the Science paper). This will be a one sample one patient, clearly defined PCR result study, and logically this is what we should expect over time as larger, more sophisticated labs further refine XMRV testing procedures. This is surely what Dr. Peterson meant at the CFSAC meeting when he said the WPI needed other researchers to pick up the ball and run with it.

Dr. Bateman is well known for her well characterized patients and her fine-tuned sense of the different subsets present in CFS and FM. She stated that she believed this study will provide definitive evidence of how prevalent XMRV is in a broad swath of CFS patients.

The Drs Light (there are two of them) role in this is intriguing as well. Dr. Alan Light came up with the scintillating study that found greatly increased receptor levels to substances like lactic acid in CFS patients. He is a pain researcher, not a retrovirologist - but it appears that both he and his wife are giving this study every kind of support that they can. We should be thankful for researchers that are able to leap over professional boundaries when needed.

The Montoya-Goff Study - CBS is also the patient of Dr. Montoyas. He noted that Dr. Goff, another celebrated retrovirologist, is working with the Montoya team in Stanford on his XMRV study - another sign that XMRV is still alive and well in the research community, at least on this side of the Atlantic.

ARUP and Blood Testing - Please do not try to get your blood tested at ARUP. Dr. Bateman emphasized that ARUP is not open for commercial testing of XMRV and does not want to be flooded with requests for that.

Conclusion - While we dont have any published papers we do appear to have the next best thing; signs that several researchers associated with a reputable independent lab are having success finding this virus in ME/CFS patients and, in fact, are redoubling their efforts to look further.
  1. Kelvin Lord
    You are like an investigative journalist on the great PBS show Nova, Cort. Super report!
  2. oerganix
    Now that's what I call some positive rumors about XMRV! Thanks once again, Cort and CBS!

    For our UK/European cousins, I say don't give up hope. There is the tradition in Chinese mythology that the dragon thrashes hardest just before it dies. Doesn't the Wessely School seem to be thrashing about a lot more lately? And as Koan has pointed out, they seem to be inching back towards the mainstream of biomedicine, from out on the limb they've crawled out upon. Maybe there's a virus under their scales....
  3. Cort
    I've just never felt all that 'virally'. I did have a pretty constant sore throat for the first 10 years. And I do get Low grade colds with fluey sensations that are really hard to kick if I get cold. But for the most part I'm more of a wired but tired, system aroused CFS patient. I also had gradual onset.

    I did some tests with a twin study about 10 years ago that didn't show any viruses. I've been told that the technology has improved so that's not definitive. The only pathogens but I know I have are some gut parasites. Interestingly, though, XM RV does appear to be very present in the gut.

    Its just a guess. When I heard about the Light Study I thought - oh - that's me! Its just an intuition on my part - who knows?
  4. ladybugmandy
    if people continue to deteriorate with no help in the UK, some of us who can, should perhaps volunteer to host a UK CFS patient. i would do it if my situation improved.

    cort..may i ask why you doubt you have XMRV?

    thank you
    sue
  5. hvs
    It would be interesting to get a couple of US XMRV positive studies would it not? Think of what that alone would say to the research world about UK ME/CFS research.

    It sure would be interesting. And I trust that ultimately US labs will find it in a variety of folks just as the Cleveland Clinic--who couldn't care less about CFS--did and does among prostate cancer patients. The UK labs, I predict, will look like fools in our eyes, ultimately; but, alas, it won't change things for patients there. The Kafka-esque situation will endure, I fear.
  6. bel canto
    Thank you, thank you, thank you!
  7. Cort
    It would be interesting to get a couple of US XMRV positive studies would it not? Think of what that alone would say to the research world about UK ME/CFS research.
  8. hvs
    Good news or bad news, any legitimate science on our disease is progress. (And, sorry, any research on this coming out of the UK is deeply, deeply suspect.)
  9. rebecca1995
    Thanks for posting this, Cort...it IS good news! Glad that Singh is involved.
  10. Cort
    I would be surprised if I have XMRV but I would love for it work out (and for me to test positve :). yet I teared up as well. I would be sooo happy if it worked out. Of course we don't know how many people must have tested positive - it could be quite low to quite high - but whatever it was enough for researchers to dig in and increase the size of the next dramatically. What a change that is! :)

    Thanks to CBS for getting the word out. He talked with Dr. Bateman about what he could and could not say and said as much as he could.