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News of replication of WPI XMRV study...

Discussion in 'XMRV Research and Replication Studies' started by Wildaisy, Nov 26, 2009.

  1. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    At a certain point, you just have to become mordantly sarcastic and mock-hysterical -- at least I did. Permanently, I mean. If you can pull it off, its definitely the enlightened alternative to screaming.
     
  2. Cloud

    Cloud Guest

    My GP, who is the best Lyme Doc up here, says she is not convinced that xmrv is anymore the puppetmaster than Lyme....Lots of great information unfolding for us quickly. Exciting times.
     
  3. kurt

    kurt Senior Member

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    Hi Koan,
    Yes, I do believe the WPI findings will not hold up, for many reasons, not just because of what I have heard about the replication studies. I have posted about that previously.

    Yes, I have connections with both C.D. and the CDC retroviral research group. Almost wish I did not. And like others on this forum, I have heard some rumors from other studies as well.

    As for testing, I would be confident with a test from C.D. However, any testing for XMRV right now is a bit of a gamble because of the lack of confirmation of the WPI finding. If I were low on funds I would probably delay testing for awhile. See what happens.

    Regarding replication studies, I am not speculating. And this is not a rumor.

    Well said Cort. This IS a competition of sorts and we really need to see the results of multiple studies. And I think competition is the silver lining in all this, because if XMRV does not turn out to be validated, there could be many new groups in a race to solve CFS.
     
  4. Cloud

    Cloud Guest

    He is very astute and was right on with the advice he gave me....
     
  5. Cloud

    Cloud Guest


    Some anti retro-viral drugs are currently being prescribed "off label" for xmrv, but they will be extremely expensive with no insurance coverage unless your HIV +.
    Regardless, connecting with cutting edge info on early responses to these meds is critical for me and the decision I have to make real soon when I stop the Vistide. Bottom line is that I need to know about responsiveness and side effects. Another VERY important issue is Resistance, and that would take more than 2-3 months to determine. Giving a retro-virus meds it will become resistant to, is like sending it to the gym to become stronger. Anyhow, I would like to give at least 2-3 months to learn these things before starting any antiretrovirals, but I will not have that much time after stopping the Vistide, which is going to happen soon.
    I also have another option.......my GP (different doc) wants to treat Babesia (and marginal Lyme) as soon as I stop the Vistide, which would also be perfect timing because my immune system may now be getting the upper hand. We knocked the CMV and other Virus's down with the Vistide, and now quickly hit the Babesia with some anitbiotics, and I would be in good shape, unless......xmrv truly is the puppetmaster and is by then kicking CMV in the ribs to get up and party again. I do believe in spooks, I do, I do, I do
     
  6. Cort

    Cort Phoenix Rising Founder

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    Viracor

    I came across this from a PDF file on the original XMRV discovery. Apparently XMRV was discovered using the Virochip microarray which contains 20,000 gene sequences from all the known viruses. This is the chip the WPI has been using to detect viruses in its patients.

    Anyway ViraCor can pick up new viruses apparently because it has genetic sequences of older viruses that the new viruses evolve from. When get prostate cancers defendant genetic sequence that was close to a murine (mouse) leukemia virus (MuLV) that had become integrated into the mouse genome.

    When they sequenced though they realized that this new virus cannot grow in mouse cells - it only grows in other types of cells; it is not endogenous it is exogenous: XMRV was born.

    This is amazing because they appear to assume that XMRV was endogenous - became part of mouse DNA - and then escaped to become exogenous. They didn't know that could happen.

    The strange thing for us is that the WPI has been using the ViraCor screen for several years and it didn't take up XMRV. They found it when they sent samples to the Cleveland clinic I believe. Why did Viracor pick up XMRV with De Risi and not with WPI?

    This is probably a red herring; they later did genetic studies that indicated that XMRV from the WPI is very much like the XMRV from prostate cancer but it would interesting to know why ViraCor didn't pick it up. Does it signify anything?

    http://www.hhmi.org/news/pdf/derisi20060331.pdf
     
  7. Koan

    Koan Be the change.

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    Hi Cort,

    This is a link to a TED talk by Joe DeRisi on the Virochip. It's fascinating.

    http://www.ted.com/talks/joe_derisi_hunts_the_next_killer_virus.html

    ETA Technology has changed so much, you can build your own DNA assay machine.

    Maybe we should!
    :D

    EagainTA Doh, I thought I encountered this talk while watching TED, as I am wont to do, but I bet I got the link right here because it talks about XMRV. I think I'll leave it here, just the same, for those who may have missed it. :eek:
     
  8. kurt

    kurt Senior Member

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    Very interesting. What jumped out at me in that release was the following:

    So how does WPI square that with the fact that their study as reported in 'Science' states that they found no correlation between the RNaseL status and infection with XMRV? That suggests to me that there is something unexplained going on in the WPI finding.
     
  9. jenbooks

    jenbooks Guest

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    Confusing

    It's totally confusing unless the CFS people have their Rnase totally derailed by another more primary infection and *then* xmrv takes over? So it's not genetic but environmental? Maybe I'm grabbing at straws here as I never paid too much attention to Rnase.
     
  10. Cloud

    Cloud Guest

    Guess I need to read the actual study because I thought WPI reported a definite correlation between XMRV and RnaseL dysfunction.
     
  11. outofstep

    outofstep

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  12. Koan

    Koan Be the change.

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    I hate to add to the confusion but

    I believe it was the supposed RNaseL mutation link that got them thinking but that RNaseL proved to be of uncertain importance in both the CFS and the prostate cancer populations.

    It could be that the RNaseL mutation has been found to be more common in both populations but does not correlate to XMRV infection.

    I will erase this post if that is not accurate.
     
  13. Hi Cecelia, three things from Dr Cofffin on XMRV:

    1) XMRV in humans almost certainly came from mice originally.

    2) XMRV is relatively recent.

    3) Active XRMV only found in lab mice and not wild field mice - as they lack the gene to be infected.

    I'm sure you knew that already, but it's interesting what he said about coming from Laboratory mice I thought...
     
  14. Cloud

    Cloud Guest

    I agree and not only for the Hope factor, but for the wise decision factor as well....Most of what I read around these ME/CFS support sites is just speculation and opinions. We learn from those discussions. Of course we need to not distort the facts, but I for one am capable of forming my own opinion about a stated rumor. Besides, I feel it was a good thing because it got everyone digging for the truth. She qualified it as a rumor, and that works for me. If anyone finds that sharing opinions and "stated" rumors are unacceptable, maybe that could be declared in the thread title.
     
  15. Cloud

    Cloud Guest

    HepB Vaccines were my trigger 15 years ago. It was sudden onset and I had no acute infections at the time. Yet now, I am recovering with anti virals.
     
  16. jenbooks

    jenbooks Guest

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    hep b

    Hi Ross I've heard that--Peterson talked about it--and folks on here, too (health care workers). Hep B has some kind of autoimmune aspect I think. It concerns me too that autism has skyrocketed since hep b vaccines were instituted on the day of birth for newborns--I think late 80's.
     
  17. Kati

    Kati Patient in training

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    Ross your case give the hope to other PWC that are from different subsets, not just the EBV or infectuous subset.

    There has been lots of speclation lately in this forum on the regards of XMRV replication studies, some with so said good sources, some good for us, some bad for us. A lot of us is also taking people for what they said word for word, though the quote was taken from a couple months ago. It's a big roller coaster in here!

    I suspect that as the data is so recent, developments and knowledge about XMRV occurs almost on a daily basis as more scientists put their hands in the pot.
     
  18. Andrew

    Andrew Senior Member

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    My heads spinning. Correct me if I'm wrong. We now have two U.S. studies about XMRV and prostate cancer (2006 and 2009). One German study about XMRV and prostate cancer. And one U.S. study about XMRV and CFS.

    ???
     
  19. Cloud

    Cloud Guest

    It seems us Nurses are the top profession with ME/CFS. I meet way more Nurses than any other profession within the PWC community.
    The hepB vaccination of newborns makes no sense to me at all. Some states were doing school HepB Vaccination clinics as well. It's freakin crazy because they are not at risk.
     
  20. Cloud

    Cloud Guest

    Very exciting times....I'm just grateful to have options.
     

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