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From the 1st annual XMRV conference

Discussion in 'XMRV Research and Replication Studies' started by George, Sep 7, 2010.

  1. Rrrr

    Rrrr Senior Member

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    sebelius has one B not two!
     
  2. Recovery Soon

    Recovery Soon Senior Member

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    Thanks- luckily I didn't get that one out yet!
     
  3. Rrrr

    Rrrr Senior Member

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    cort wrote this on his xmrv buzz page (http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx)

    "The Director Drops In and Stays.... - Dr. Vernon was astonished to see the Director of the NIH drop into the Conference and then STAY. She said he was there in the front row and asking questions for 75 percent of the Workshop. She has been to many many conferences over the years and she's never seen that before.?"

    is this true? i had not heard that collins stayed at the conference at all past his opening remarks. if he stayed for 75% of the conference, this is HUGE. just HUGE.

    is it true? i have not been able to be on the forums much this past week, so if this has already been discussed, just tell me (and tell me where?)

    best
    rrrr
     
  4. Mark

    Mark Acting CEO

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    Summary of News from the Workshop

    The scientific news from the XMRV workshop seemed underwhelming to say the least - but thanks to Mindy Kitei we caught a glimpse of some of the information discussed there that was not released directly by the conference organisers. So I thought it might be useful to summarise what we have learned so far from the conference....

    Other than the Q&A session, and the Twitter feed from Cleveland Clinic, I've so far seen 3 other sources for additional information:

    Dr. Cheney's comments:
    http://www.forums.aboutmecfs.org/showthread.php?7507-Dr.-Cheney-comments-on-the-XMRV-workshop
    Dr. de Meirleir's poster presentation:
    http://www.forums.aboutmecfs.org/showthread.php?7508-Dr.-de-Meirleir-s-poster-at-the-XMRV-Workshop
    Conference Roundup from CFS Central (Mindy Kitei):
    http://www.cfscentral.com/

    Main headlines from the conference were:

    • Anthony Fauci (head of NIAID) to oversee Ian Lipkin (ace pathogen detective) to oversee major NIH study on XMRV and CFS.
    • Blood Working Group head says issues with blood collection & processing may explain the discrepancies between XMRV studies
    Beyond this, however, there were some other headlines which came mostly via Mindy Kitei; sources in brackets:

    • 4 more positive studies, 4 more negative studies (Cheney)
    • Mikovits found 70% of UK samples +ve for MLVs, mostly XMRV, and 4% XMRV in controls (Kitei)
    • De Meirleir detailed the pattern of immune activation in his XMRV+ CFS patients (de Meirleir)
    • Hanson reported her results confirm Lombardi/Alter findings (Kitei)
    • Ruscetti's results are presumably the 4th positive study (?) but are not yet released
    • Blomberg confirmed 3 of 5 Mikovits samples were +ve for XMRV (but couldn't find XMRV in his own study cohort)
    • Singh found a strong association of XMRV with prostate cancer
    • Infection pattern of XMRV in macaques was detailed
    • Klein found XMRV in urine
    • Fluorescence test may distinguish XMRV from MLV contamination
    • XMRV encodes the Orf3 protein
    Some of the above items seem to be quite strong news to me, so my reason for listing them is really to highlight that we may have learned more than we thought at first - thanks to Mindy Kitei we have this extra information.

    To me the strongest points to note are:

    - Dr Singh's study in prostate cancer found that those with higher scores on the Gleason scale for estimating prostate cancer prognosis were more likely to have XMRV. This seems to me to be very strong evidence that XMRV really is associated with prostate cancer, and the fact that the positives correlated with the Gleason scores indicate that this is not some 'contamination' artefact, but rather that the studies that are failing to detect need improved methodology. This detail of association with Gleason scores strikes me as the strongest evidence yet that those who are finding XMRV are not merely showing lab contamination, but are at least finding something that is correlated with human disease.

    - Dr Mikovits confirmed XMRV in the UK. There is no detail yet of how the controls were selected and collected, but Kerr was involved in the collection process, and if the controls vs CFS samples were blinded in any way, the 70% vs 4% figure would represent the strongest proof yet that the WPI are detecting XMRV associated with CFS. The results are also proof that whatever the WPI are detecting, it is present in the UK just as in the US.

    - Dr Blomberg's positive test of 3 out of 5 of Dr Mikovits' samples is actually the first independent confirmation of WPI detection of XMRV. Blomberg's negative results on his own samples may be explained by the collection/storage methodology required for successful detection of XMRV, but his positive results on Mikovits' controls are a confirmation of XMRV detection in those samples.

    - Ongoing work by those investigating XMRV has detailed the infection pattern in macaques and the immune profile of XMRV-infected patients. Two new tests have also been developed: a urine test and a fluourescence test to distinguish XMRV from mouse viruses. And XMRV encodes Orf3. All this ongoing work will of course be invaluable.


    I hope that's a helpful summary...do please let me know if there's any other positive news that I've missed...
     
  5. kwietsol

    kwietsol

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    Excellent and very helpful post, Mark. I was hoping that someone with more understanding of the issues than I would summarize. Thank you!
     
  6. leela

    leela Slow But Hopeful

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    Thank you Mark, that is most helpful!
     
  7. camas

    camas Senior Member

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    Thank you for that great summary, Mark!
     
  8. Rrrr

    Rrrr Senior Member

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    this is a stunning summary!!! wow. this should be copied and posted everywhere. do we have yr permission to do that? including sending to ProHealth and other forums?
     
  9. Rrrr

    Rrrr Senior Member

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    you wrote, "Ongoing work by those investigating XMRV has detailed the infection pattern in macaques and the immune profile of XMRV-infected patients."

    question: what was the info shared at the workshop that related to the immune profile of xmrv-infected patients?
     
  10. Rrrr

    Rrrr Senior Member

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    additional headline: NIH DIRECTOR COLLINS STAYED FOR 75% OF THE CONFERENCE. THAT IS A BIG DEAL.
     
  11. Boule de feu

    Boule de feu Senior Member

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    I would like to follow this thread but don't know how to do it (unless I post something)...
    Can you help?
     
  12. Rrrr

    Rrrr Senior Member

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    what does "grand slam" mean? why did judy say the xmrv workshop was a grand slam? does anyone know?
     
  13. julius

    julius Watchoo lookin' at?

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    I was wondering that myself when I read it.
     
  14. eric_s

    eric_s Senior Member

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    It's when you hit a homerun in baseball, i think. But why she said it, i guess we can't know that, because she's referring to stuff that can't be shared with the public at this moment. So we have to wait some more.
     
  15. Bob

    Bob

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    I had to look that up myself!

    or
    So it looks pretty good, whatever Judy means.

    I imagine that Judy thinks the growing evidence behind her research is now overwhelming, and that the scientists on board are of such high status that this conference put to rest any doubts about the significance of the XMRV found in CFS/ME patients and in the normal population.

    When you look at what's going on behind the scenes, it seems to me that this research is unstoppable now...
    I'm especially thinking about the blood working group, who are standardising methodology, and have found the problems in the blood collection and storage that cause the zero/zero studies. And then there's Lipkin, who isn't going to mess around. Lipkin and the Blood Working Group are both working with the WPI, and they are not working with people like McClure.
     
  16. shannah

    shannah Senior Member

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    Hi Boule de feu,

    At the top of each page of the thread there are headings with drop down menus. Click on 'Thread Tools' then on 'Subscribe' in the drop down menu.
     
  17. shannah

    shannah Senior Member

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    I realize we have to wait for publishing (or leaks) but from the Q & A at the end of the conference, you certainly wouldn't get the impression that there was a 'Grand Slam' in here.
     
  18. Boule de feu

    Boule de feu Senior Member

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    Thank you Shannah (and Bob) for this.
    I will not bother you, anymore. I will just read! (lol)
     
  19. Mark

    Mark Acting CEO

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    Unless I'm mistaken, de Meirleir's poster detailed elevated levels of various T-cells, inflammatory cytokines, etc - showing levels "in a pattern similar to that seen in HIV infection" was, I think, roughly the quote. The link to that PDF of KDM's poster is worth following but I think that summarises it And by the way: I think it's great stuff that this poster is public, well done and thanks due for that to Dr de Meirleir, and it's very clear and informative too, but where are the rest of them I wonder?!

    I am assuming that once again there are very good and professional reasons why many of the details of the information presented to the 200 distinguished attendees can not yet be made 'public' to the scientific community in general, and that the argument "time's a runnin' out for me here boy" amounts to nothing in face of these interests. The interests still seem to me to be ultimately organisational, profit-driven, and superficial, and to slow down artificially the progress of science by slowing the dissemination of information, and so therefore a more rational and modernised publication policy and a structure enabling wider and more open scientific discussion would seem to be a very high priority.

    Thanks everyone for your kind comments on my summary, glad it was helpful, hope it's pretty accurate.
     
  20. Mark

    Mark Acting CEO

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    I've been asked about Dr Blomberg's finding of 3/5 of Dr Mikovits samples as positive for XMRV, when all his own were found negative, and whether this could be explained by contamination of those samples. This prompted the following ramble/muse about these results, and about "contamination" in general, which I thought I might as well post here...

    I suppose that, in short, all one can conclude is that Dr Mikovits' samples now contain what an independent researcher would assess as being XMRV, and that this independent researcher was NOT finding the positives using contaminated equipment. He, too, says he finds XMRV in those samples.

    I would argue that there is really just the one simple question, which comes up in every context: whether the XMRV-like sequences that are being detected by a variety of researchers are ALL 'contamination', meaning that it comes not from the patient sample but from some other part of the apparatus, or whether it does indeed come from the patients' blood.

    To put it another way, if one were saying these samples Dr Mikovits supplied were contaminated, then such contamination would very much imply that her lab is or may be contaminated, and in turn that her previous results were due to contamination. So: it amounts to the same original question about contamination, it doesn't change that...

    I suspect that whether all the people who detected XMRV so far were using contaminated samples (using common contaminated ingredient(s), presumably) ultimately remains an open question until Dr Alter completes the 'extra gold standard' sequencing step, showing XMRV within an infected cell; they need to show it integrated into infected tissue (but I think you have to find out where the tissue reservoir is to have a decent chance of detecting this; it also would take about 6 months, but I believe/hope that job is under way). And note that when they do so, the scientific argument then swings to needing to demonstrate that it definitely isn't an ERV sequence, which has been done but again I imagine that will be scrutinised more deeply if cell DNA integration were shown.

    Anyway I'm rambling because I'm not sure what the short answer is as to "what can we interpret from this?". Firstly one has to note: this came from Mindy Kitei; it would be interesting to see what she thought of the full context of discussion about these positives, because Dr Blomberg seems to be asserting that his XMRV test found XMRV in those samples. Even if it was contamination of the samples, it could not have been contamination of Blomberg's equipment...

    ...Yes I think that's basically what one can conclude logically, taking all these bits of information into account: noting that Blomberg is saying "yes I detect XMRV in these, but in nothing else", he is independently confirming Dr Mikovts' finding of XMRV in those 3 of her 5 samples, unlike any other samples he tested (using, one trusts, the same equipment...but the details will be important of course, as ever...). Conversely, if there is a contamination issue, then it is (at least now) present in the samples Dr Mikovits provided. One way or another, it all points to the sample collection and preparation...

    I think this conclusion moves us to exactly where we are going anyway, or indeed where we already are, which is to say: is this difference in sample preparation and storage methodology that is required to detect XMRV caused by (for example) some property of XMRV that requires the sample to be handled in a certain way, or is that required methodological difference the result of contamination? In other words, where are the XMRV and the other sequences MLV-related sequences actually coming from?

    I should add, though, that to me this is a purely academic argument, in view of the overwhelming evidence against contamination.

    For me, one of the clinching factors is the consistency of the percentages (in PC controls as well as CFS controls) found by a variety of diverse and neutral groups.

    The variability in rates is well within what one would expect, averaging to around 3-8%, and the positive studies in both PC and CFS are all close enough, with no real outliers (the Chinese study is the furthest out; evidence of a contaminated lab doesn't count) to be clearly clustering around something real, and most importantly (taking Dr Singh's association with the PC prognosis scale into account especially), these researchers who do find XMRV are consistently finding this "contamination" disproportionately in people with the worst PC and CFS as compared with controls.

    This last point means that IMO we can now safely say that either:

    (a) The XMRV detected is actually coming from something used by the +ve studies in their blood collection and storage process, AND therefore the blood of those PC + CFS patients is a specially suitable environment for contaminant XMRV retrovirus to thrive in, in vitro at least, AND therefore the PC and CFS patients are very probably disproportionately immune-suppressed,
    ...or...
    (b) The XMRV detected is coming from the patients blood, AND it seems then likely that this is associated with immune-suppression, likely also to play a key causal role, but possibly purely a passenger.

    So in this sense there isn't quite such a huge gulf between the two scenarios as may at first appear: in both cases one has strong evidence of a certain kind of retrovirus-related immune vulnerability to xmrv in geographically diverse groups of patients, and that immune vulnerability demands explanation. Even in case of contamination, the difference in results between PC/CFS and controls would still imply a very significant breakthrough in understanding ME, although the political impact would of course be greatly diminished.

    Arguably the recent Scottish study makes up for much of the political capital that may be lost (insofar as the UK is significant): that study too establishes that there are virus(es) afoot, which should now at last be hunted.

    But my view on XMRV/ME is that an incredibly solid level of scientific proof will be needed for full international acceptance and that may take some years to happen, even though on examination of the evidence in the round it is extremely likely to be true.

    If we are not out-and-out conspiracy theorists, we now also have massively more confidence that the complexity of the issue and the political confusion won't, this time, prevent a proper scientific examination to explain the results. Collins and Lipkins' involvement is a massive boost in that respect.

    In conclusion:

    1. Contamination will be and always would have been an open scientific question until the 'gold standard' techniques of demonstrating viral integration were achieved,

    2. The results in the round, however, continue to make it very unlikely IMO,

    3. Blomberg's findings show that any contamination explaining the results would have to be present in the samples themselves, which she supplied to Blomberg, and is not in his equipment, at least,

    4. Thus any contamination would have to be something that affects the blood sample collection and storage process, which is what is at issue anyway,

    3. Even if contamination were the explanation, apparent immune suppression in these patients demands to be explained,

    4. Even if contamination weren't the explanation, immune suppression would still be a theoretical possible explanation of the results until causality is proven,

    5. If one is confident that contamination is not the explanation (and also if not), one can at least now be confident that the truth will be revealed within (estimated) a few months to a year from now - unless one doubts the impartiality of the team of Collins, Fauci and Lipkin (most importantly, Lpikin) and assumes them part of, or victims of, the conspiracy.

    6. Meanwhile, details from the positive studies and further findings will continue to roll in...and the urine testing could potentially deliver lots of interesting data quite quickly - if such data showed significant and obvious patterns of association with various specific disease(s), all the other questions would become relatively moot points anyway...
     

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