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A Little Poisoning Along the Road to ME/CFS
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OTTAWA CONFERENCE: Judy Mikovits slides on HGRV's

Discussion in 'XMRV Research and Replication Studies' started by Dreambirdie, Sep 23, 2011.

  1. Dreambirdie

    Dreambirdie work in progress

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    From Jamie's blog:

    "The intrepid Dr. Mikovits went up against Darth Vader today in Ottawa. In the face of incredible adversity, she took the heat. For us. And she points the way to the next step. Next Generation Sequencing. Here are her slides. Click each to enlarge. May the force be with her. Brava!"

    http://treatingxmrv.blogspot.com/2011/09/when-going-gets-tough.html?spref=fb
     
  2. Jemal

    Jemal Senior Member

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    You gotta love the last slide :D
     
  3. Dreambirdie

    Dreambirdie work in progress

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    Yes, so great she has retained her humor in spite of all the UGLY she is getting hit with.
     
  4. Bob

    Bob

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    Ha, yes, I've just seen it... It made me chuckle. :D
     
  5. omerbasket

    omerbasket Senior Member

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    I now have serious doubt that HMRVs really exist in ME/CFS patients. However, THAT IS NOT TO DECREASE EVEN SLIGHTLY THE LEVEL OF THANKFULNESS I THINK WE SHOULD ALL HAVE TOWARDS DR. MIKOVITS. She risked her career for us and for something she believes in, and she does her best in order to not let it get away until we can be as close to 100% as possible sure to whether the connection is real or not.
    Also, I know that I would be 100% sure of it only if I would do the experiments myself, and therefore I totally understand why she is confident in her findings - because she found them herself, and she can only be sure in what she herself finds.

    Anyway, I believe that she is an angel and that we should all be thanking her, and that all the thanks in the world won't be enough.
     
    ixchelkali likes this.
  6. Bob

    Bob

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    I believe that this slide relates to the Hemispherx research that we've heard about...

    NGS techology offers analysis of the entire body pool of circulating nucleic acid DNA from apoptotic cells.

    New NGS studies indicate that CFS sera exhibit alterations in apoptotic DNA sequences. (see Strayer D, and Mitchell, B et. al. LB poster).

    Under conditions of high stringency and a 45bp minimum size, Low levels of XMRV reads were observed in 7 out f 8 CFS and 2 out of 17 non-matched control samples.

    No reads were observed with the pMRV DBs.
     
  7. Bob

    Bob

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    Thanks for sharing your thoughts omerbasket. :thumbsup:
    I totally agree with you.
    But I understand that some people won't hold the WPI in such high esteem as we do.
     
  8. Bob

    Bob

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    So here are Judy's future plans...

    Future Plans.

    Obtain full-length sequences of human HGRVs in CFS/ME

    Determine Human Integration Sites for HGRV infection in CFS/ME

    Identification of Tissue Reservoirs for human HGRV in CFS/ME

    Identify mechanisms of HGRV latency


    She's not giving up!
     
  9. LaurelW

    LaurelW Senior Member

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    Regardless of how the whole XMRV thing pans out, the publication of the 2009 Science paper was a turning point that focused attention and resources on our illness. For that reason, I will be eternally grateful to Dr. Mikovits and the WPI.
     
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  10. Spring

    Spring Senior Member

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    Judy really has 'guts' !!! Whatever comes out eventually, I like her!
     
    Kati likes this.
  11. Daffodil

    Daffodil Senior Member

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    guts is an understatement. she is like the terminator lol
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There has to be some sort of infection going on as many cfs/me people have abnormal immune tests like nk dysfunction, lymphoproliferation disorders, cytokine disorders as well as many people who have shown improvement with antimicrobial treatments. I just hope the they keep searching for infections and treatments in cfs/me. I hope judy and WPI keep persuing their work, i think they realise there is something going on with us and we arent a bunch of nutcases, i just hope this drives them to keep working for us. Its not going to stop me donating to WPI, they have mentioned before that they will keep working for us.

    cheers!!!
     
  13. Cort

    Cort Phoenix Rising Founder

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    Dr. Mikovits gave a nice talk and in her debate with Dr. Coffin which was often them talking directly to each other everyone maintained their cool. Dr. Mikovits actually seemed a bit more relaxed than last time I saw her.

    Everything will depend on the WPIs ability to do full length analyses of the different isolates and prove that they don't come from VP62. They are working on that although she did mention the expense of doing it meant it would be slow....

    All the tests were a wash though. None of them, the PCR, culture or antibody tests worked. Even though Ruscetti and the WPI used the same tests they found XMRV in different samples from each other and as often as not in healthy controls. PPlus they identified the same sample differently depending on what test they used.

    They did argue that XMRV may have disappeared from the blood as it does in the primates but that doesnt explain how they misidentifed the healthy controls so frequently.....I don't think theres a good explanation for that.
     
  14. alex3619

    alex3619 Senior Member

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    Hi, I am largely with omerbasket and Bob on this. XMRV has moved from likely to unlikely in my view - but unlikely things are sometimes right and so we need to let the research continue if they think it appropriate. Funding is going to be a real problem for WPI XMRV research now.

    To put this in perspective, consider what would be the case IF XMRV was the answer and the WPI gave up as soon as there was a problem. We would be outraged, particularly when it was later proven that XMRV was the cause. The risk of HGRVs needs to be examined in detail as a risk management strategy even if you think that XMRV is unlikely as I now do. The downside is so large that research is important even if its an outside risk. Furthermore any future cause is also going to be hotly tested (presuming HGRVs are not the cause) - why would we want our researchers to give up in the face of some opposition?

    I agree with Lipkin on this though. The Lipkin study if very different in many ways and we can't know beforehand how it will turn out. It has just become even more important for the WPI's results to be verified by Lipkin, if not essential.

    So, in short, the WPI has again proved its on our side, that they can continue fighting even when things get tough. I think it unlikely they will be proved right, now, but unlikely is not a statement of fact - they are either right or wrong and in time the science will show which.

    I find the new DNA testing that WPI is hoping to use very interesting, as are their results. Since XMRV seems to be much less likely, I think that emphasis on broader tests without presumptions are a good thing.

    In the meantime I still support the WPI along with all the other biomedical researchers who are working on ME and CFS.

    Although I am going to have to think about my new signature!

    Bye
    Alex
     
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  15. ixchelkali

    ixchelkali Senior Member

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    I agree that the WPI has worked hard on our behalf, and I'm grateful for their effort even if XMRV isn't the answer.

    But I have to say that Judy's explanation of why they didn't find XMRV in previously XMRV-positive patients isn't convincing to me. I agree that ever since the macaque monkey study I've thought that blood might not be the best place to look for the virus. It's true that in that study XMRV was cleared from the blood after a few weeks. But then they shouldn't have been finding XMRV in 67% of ME/CFS patients in the 2009 Science paper, let alone the nearly 100% they've reported finding it since. If there's no viremia after 4 weeks, or even if there's wildly fluctuating viremia, they shouldn't have found it in such a high percentage of patients' blood in the first place. Saying that the reservoir is in the tissue doesn't explain why they found it in the blood two years ago and not now. It strains credibility to the breaking point to try to believe that two years ago all those patients' viremia was in an upswing, and now all the ones they re-tested had cleared the viremia. After all, many of those original patients had been sick for years.

    Ever since the first badly done negative studies started coming in (just weeks after the 2009 Science study was published), we've been saying that what was needed was a well designed blinded study with the WPI lab and the other labs testing the same samples. Well, we finally got that, and I think we need to accept the results, even if they aren't what we hoped for.
     
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  16. currer

    currer Senior Member

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    As I understand it,(and Ive got to update myself fully yet) XMRV never existed.

    It was incorrectly constructed by Silverman from three viral fragments found. This explains why no one could find it when they set their PCR to search for these specific sequences. In fact this event illustrates the danger of relying only on PCR to tell you whether there is a virus present. If the sequences you look for happen to be wrong you will get a false negative, as all the negative studies did.

    The serology (antibody) evidence as also the electon migrographs show there is an infectious retrovirus present in ME patients, a HGRV. This (or These) still need to be sequenced, correctly this time.

    Then the PCR based replication studies should come out positive for gammaretrovuirus infection in ME patients.

    We have to give up the term XMRV now. It is a term used to describe an artificial construct that in fact has never existed in patients.

    We will see another term created to describe the HGRV (s) which exist in patients, once they are correctly sequenced.
     
  17. SilverbladeTE

    SilverbladeTE Senior Member

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    Folk just need to remember the issues, fights and time with finding HIV, so, XMRV (or rather, MLV et al) is/are not dead until the Fat Lady Sings, wich is usually after at least 5 years, and sometimes, it still comes back and bites you in the ass 15+ years down the line or more as you find your "much vaunted systems/standards/devices" plain just weren't up to the task ;)

    Retrovirus makes perfect sense for ME. Retrovirsues are NOT easily found, they're the "Stealth Bombers" of the viral world, products of billions of years of evolution and so they're damn hard to find, which is why it took so long to find and understand them to begin with, plus the more novel and "off base" their strategies of existance get, harder it gets to identify these new ones (see how Lyme and other bacterial organisms have very good methods of avoiding the immune system,which can also means they're hard to find by us).

    Give you an example from Physics, a much less messy area where massive repeatability and preciseeemasurements are the norm: Dark Matter, real, or not real? See "MOND" Theory and other issues. If there is uncertainty there, there's no damn room for certainty in highly complex biology, where you cannot run a million tests on a subject!

    And you are still left with: WTF then causes ME and prostate cancer, if not XMRV or MLV?
    If XMRV/MLV are finally proven not to be the cause, then that is in fact BAD bloody news, because it maybe something we simply cannot detect as yet (or more likely it's so damn "stealth" adapted it's gonna be a right SOB to find)
    .
    For now, XMRV alas, seems out of the picture, though I'm still gonna say the possibility of it being a genuine harmful contaminant in vaccines etc will have made some scuzzbags hush this up, becuse yeah, that's the way people really work.
    No, I'm not saying the researchers are fraudulent, just that weight will be given against any such "scare story"
    a serious contamination issue with vaccines or other injected biological material is a nightmare for industry and government, AND those who wouldn't want to see science/technology get repudiated especially at this time of increased reactionism from religious fundamentalist nutcases of all types across the globe.
    fear (and threats of funding changes) can make people too cautious, even in Science.


    It's the Mikovitz's who push Science on NOT the Wessely's. Right or wrong, they hammer away until either the negatives pile up so much you've got good proof against (which is jsut as important in Science but is oftne overlooked since you don't get medals/grants for "pruning", sigh)...or their sheer bloody mindness blows through the sloppy, lazy, cowardly nincompoops who clog things up by ganging up on the the innovators ike ivy strangling a tree.
    See Paul Ehrlich, who's life, way he got screwed over, and issues/diseases he worked on are MOST apt.
    http://en.wikipedia.org/wiki/Paul_Ehrlich
     
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  18. Bob

    Bob

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    Well, I'm still keen to see all lines of investigation carried out.

    But I have to say that the whole thing is a major mess, to say the least.

    And it's a major set back for the retrovirus theory.

    It does seem that there is something in the WPI's research, but it's going to take a very long time to figure out exactly what's going on. And that's if they even get enough funding to continue their retrovirus research.

    It also seems like rather a coincidence that the retroviruses that Judy is finding happens to be the same type as the VP62 XMRV contaminant that she was originally looking for, and that she based her original research on.

    I've always been the staunchest supporter of the XMRV research, but I'm going to take a step back from it now, and just watch it as it develops. I still hope that they find some answers there.

    What I don't understand is how and why the VP62 construct, if it was a false contruct, was allowed to determine exactly the sort of virus they were looking for, for so long.

    And why is it exactly the same as a man made lab contaminant.

    I just think that there are so many unanswered questions right now, that it's going to take many years to sort out this mess.

    There does seem to be something in the WPI's (and others') research, as they are getting positive readings for something; and they have isolated various viruses; and they are getting antibody readings. I hope they get the space, time and funds to continue this line of research. At the very least, it is fascinating from a purely scientific point of view.
     
  19. VillageLife

    VillageLife Senior Member

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    Is it that parts of the old XMRV are the same as these new XMRVs is that how there finding it?
     

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