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XMRV Webinair - Results of BWG - Q&A Video and Slides

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Firestormm, Oct 16, 2011.

  1. The implications of the BWG data is that the WPI lab assays / procedures were neither sensitive nor specific. WPI could have avoided some of these issues by internally blinding their test samples and running the tests multiple times just like the BWG folks had them do in the larger study.

    Suppose you had the choice of flying in an airplane piloted by a really nice person who empathized with all your problems and said they cared about you but was incompetent. The alternative is flying in an airplane piloted by someone who is competent but does not care about you or your problems. Which airplane would you get on?
    urbantravels likes this.
  2. Wonko

    Wonko Senior Member

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    Neither....
  3. currer

    currer Senior Member

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    False dichotomy.
  4. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    It's false logic because the judgement of incompetence is not independent of the two options, nor for that matter is the judgement of competence.
  5. ukxmrv

    ukxmrv Senior Member

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    To me the BWG is the incompetent option. They didn't end up with a work test to find HGRV's in the blood supply.
  6. barbc56

    barbc56 Senior Member

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    Put very nicely. Thanks!!

    I'll go with the gruff pilot who knows what he is doing.

    Wasn't there also something that Lo/Alter should have done with their samples that would have shown their conclusions were false but this didn't happen as they were in a rush to publish? Was this another paper?

    ETA Is internally blinding something that is done in most papers?
  7. Dan_USAAZ

    Dan_USAAZ

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    The gruff pilot flies an imaginary plane that he describes to the passenger/patient while they are lying on a therapy couch. The trip sounds great, but the patient does not really go anywhere. This has been the imaginary trip we have been on for the last 25 years.

    I dont believe either entity in the original analogy accurately reflects reality.
  8. I think we all are interested in seeing competent scientific research being done on CFIDS. WPI as an institution was clearly motivated to perform research - I don't think it did it particularly well. I also think WPI could have conducted relations with the rest of the scientific community in a much more effective way. Clearly there is a bias against CFIDS in the medical / research / government community. But we must remember that good science will overcome that bias over time. I don't think there is a well organized conspiracy that can suppress good science - certainly not in all countries of the world at all times.

    Good scientific results can be replicated by other scientists. Incorrect results cannot be. However much we as patients might like a particular researcher or hypothesis, science is ultimately decided by scientists not by public opinion in the patient community. I don't really care what cures me - I just want to get better. While a viral hypothesis ignited hope for a quick route to health like what happened with AIDS, wishing does not make it so.

    If you want to continue funding WPI / Judy Mikovits that is your choice - no one is stopping you. I donate money for research each year - I wish more patients did. I just want my dollars to be used effectively - i.e. I want to fly in an airplane with a competent pilot.
  9. ukxmrv

    ukxmrv Senior Member

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    Slovokia, are you judging the design of the BWG and their lack of a test for HGRV's as being competent research?

    If so, can you please let us know what this is based on.

    I hope that you are not insinuating that because patients want to see HGRV's researched that they are somehow incompetent dupes blinded by superficial emotions about the authors and incapable of assessing research papers on their scientific merits.

    You haven't posted very much to this forum and I wonder if you are away of the many long and complicated threads where we patients tackle each XMRV/HGRV paper as it comes out and analyse the results?

    We all want to get better. I'd like to see more competent attempts to replicate the WPI's work and an explanation from the failed papers on the VP62 clone and the effect that had on their results.

    I'd like to see proper post mortems on why the BWG failed to find a test for XMRV using this method.

    All we patients have asked for is competent research. We all want a cure. My opinion as a long term patient who has been reading research papers in their entirety for over 20 years is that I would like to see more HGRV research done and I don't care about the "bed side" manner of the person who does it.
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    slovokia, perhaps you could explain why you wish to overturn four or five major definitions of this disease by using the derogatory term CFIDS which perpetuates the false notion of chronic fatigue. There are a couple of non advocacy groups now beginning to use this term as a rebranding exercise for what seems commerical reasons alone. Peterson recently revived this term to conincide with launching his new centre. And the CAA is using it. I know you don't want to perpetuate the chronic fatigue label, so why persist in using CFIDS?

    For me PENE and POTS/OI are the major symptoms, as they are for most ME patients. Chronic fatigue is not a symptom. It is a derogatory term.
  11. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    barb, you can do better this. This could be interpreted as putting political gain over the welfare of sick patients. Your accusations are not based on fact, but on a line of propaganda being pushed by the CAA and CAA affiliates. You accuse Lo/Alter of rushing their study and messing up their samples, then glibly say it could be another paper (it was another paper - most of the negatives). Nothing of the sort occurred with Lo/Alter. Please refer to your source to prove me wrong. If this is not true, it is just baseless rumor mongering aimed at bringing down the Lo/Alter paper. Have you finished with Mikovits? Is it time to remove the other pillar of HGRVs? The only issue with Lo/Alter is that their BWG assay was not the one they used in their study, which is why their BWG results stank.

    Of course I understand why the CAA would want the Lo/Alter findings diminished, but pushing a political line, devoid of facts is a little transparent. At least you are up front about your support for CAA, but I am glad the silly hysterical dig at IMEA has gone from your signature. I am not a fan of IMEA, but if they are getting under the skin of the CAA, then they must be doing a good job. But why try to get rid of them, are they really that great a threat to the CAA? At least they are an advocacy group, while the CAA is not, according to McCleary.

    The other thing which puzzles me is the repeated and baseless accusations of incompetence against Mikovits, yet it was Silverman who created the mess. Noone seems to treat Silverman the same way. In fact Silverman's incompetence seems to have been rewarded by giving him grants. It was Milovits' competence which created the scenario for her departure from WPI.

    In fact the real incompetents are those negative studies which continued to use Silverman's VP-62 clone, long after its effectiveness at finding XMLVs and pMLVs was called into question. The fact that hundred of thousands of dollars has been wasted in this exercise of futility is nothng short of scandalous.

    You spoke of polarizing in another thread. Well what could be more polarizing than muddying the reputation of researchers and research with baseless accusations. The use of CFIDS is also a very polarizing term. You are squarely in the middle of the us and them battle, pushing propaganda harder than most. If you want us to have a different opinion of what you are saying then please use factual evidence when you attempt to denigrate a researcher's work.

    Have a look at the time scales of the negative papers, most were rushed through at breakneck speeds, with outrageous conclusions bearing little resemblence to their real findings. XMRV is dead is not a scientific finding. The Lo/Alter study was a very good study. So was the Lombardi study, in terms of blinding, methodolgy, selection of cohort. Because three labs checked Lombardi's samples, Silverman's contamination was isolated. This was down to good management, not incompetancy as many would suggest. None of the negative studies went to these lengths, so the potential for contamination, failure of assays is much higher in the negatives.

    Why did no one really try to replicate Lo/Alter or Lombardi exactly? Not as if the money wasn't there, afterall the negatives spent hundreds of thousands of dollars on saying the same thng time after time.
    RL_sparky, jace, Lou and 1 other person like this.
  12. asleep

    asleep Senior Member

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    Spot on Rusty!
    RL_sparky likes this.
  13. The salient result of the BWG study was that WPI could not even replicate its own work. WPI participated in the BWG study and had the ability to raise any issues with the studies design that would interfered with effectiveness of their assays / tests. Even if all the other labs were doing it "wrong", WPI should have been able to replicate their earlier results.

    It really is pretty simple - If I claim to have a test that discriminates between patients and controls and another group acts to blind and randomize the samples I test, I should be able to discriminate properly between test samples before knowing where they came from.
  14. Now to consider the issue of HGRVs:

    Has anyone sequenced one of them?
    Has anyone produced a test that can find them in human tissue / blood etc?
    Has anyone found them in CFS/ME patients?

    They may well be worth studying. But I am not sure I'd want Judy Mikovits / WPI to be doing the work.
  15. currer

    currer Senior Member

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    Hi slovokia,

    In the Invest in ME talk, Dr Mikovits mentions that her team were working very hard to meet the requirements of the BWG.
    One of those requirements was that they adapt their assays to use EDTA as an anticoagulant, instead of heparin, which was what she normally used.
    She says that the EDTA destroys the magnesium in the cells and "takes the LNCAP cells right off the back of the flask", so I think her implication was that they could not culture.
    She says that the BWG protocols reduced the efficiency of their tests to 10% (note not BY 10%)

    I have not seen this referred to in the publicity around the BWG, but I would think it a relevant issue.
    The BWG was about designing and testing rapid throughput tests for use on large amounts of blood.
    It is not about research testing for footprints of infection in clinical samples.

    I ought to mention that the talk Dr Mikovits gave was in May this year, long before the barrage of negative publicity raised by the BWG. She only refered to it in passing but it was clear that there were problems for her to adapt her tests to the BWG requirements and that this work had little to do with her other research work.
    jace and ukxmrv like this.
  16. ukxmrv

    ukxmrv Senior Member

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    The WPI didn't attempt to replicate their own findings. That's not what the BWG was about.

    The conditions from the very start such as the use of different chemicals in blood collection tubes were different from their own conditions.

    The "salient" fact from the BWG was that different labs tried to produce a test under their conditions (i.e. the blood tubes) and failed.

    The BWG was a failure and I'd like to see better analysis of why it failed. I'd like to see the public saved from possible problems with HGRV in blood supply contamination. It may be too late for me but I don't want others to suffer.

    I'd also like to see further research on HGRV's and possible involvement with ME. Dr Mikovits was part of the team that brought this to our attention. We owe her a huge debt of gratitude for being brave enough to want to continue her research.

    This is too big to be petty over personalities involved in the research.
  17. So you take the position the anti-coagulant made it difficult for WPI to detect what it did in its initial studies.

    How come all of the other labs properly detected XMRV in all the spiked positive controls in the NAT-PLASMA tests?
    How come WPI could not reliably detect the spiked controls in the NAT-PLASMA tests?
    Why did WPI detect positive presence of the virus in some of the negative controls?

    Can the anti-coagulant really explain these results? It might explain the inability for WPI to detect spiked controls but not the false positives detected in the negative controls.

    Take a look at page 22 of the PDF handout for the webinar located at:

    http://www.cfids.org/xmrv/srwg-webinar-oct2011.pdf

    Look at the serology results for WPI and the NCI lab - you could have gotten the same results from flipping a coin.
  18. ukxmrv

    ukxmrv Senior Member

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    No, I am taking up a position that the BWG was not designed as a replication of the WPI Science paper.

    If you have any evidence to the contrary please feel free to post it here instead of cherrypicking which points of posts you would like to address.

    The BWG failed, the WPI failed and the other labs as well. No argument. Not a replication though and it is unfair to present it that way.
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  19. currer

    currer Senior Member

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    I think the pointcould be that the BWG introduced new variables into the procedure - which could alter the results in unforseen ways.
    ukxmrv, RL_sparky and jace like this.
  20. santi

    santi

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    I think the gruff pilot here is Mikovits. She's a damn good scientist but said some things that lowered a bit her profile.

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