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New post from Dr. Deckoff Jones, talks about Knox/Peterson

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Jun 8, 2011.

  1. Jemal

    Jemal Senior Member

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  2. eric_s

    eric_s Senior Member

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    I wonder if Annette Whittemore ever had a seat on the board of the HHV-6 Foundation. It must be maddening if you feel like something you founded is now some sort of enemy.
  3. eric_s

    eric_s Senior Member

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    Does anyone know what happened to Kristin Loomis' daughter/son? Because Dr. Snyderman said "had". Also it would be interesting to know more about the nature of the relationship between Konstance Knox and the WPI. I always thought it was a contract between the WPI and the Wisconsin Viral Research Group (with Konstance Knox being employed there) and not that Konstance Knox was employed by the WPI. But the recent blog entry sounded a bit as if she was employed by the WPI.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    She used to contribute big money to CAA too and look how they return the favor.
  5. eric_s

    eric_s Senior Member

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    It shows that it's important to have some control over the entity you support or found...
  6. Esther12

    Esther12 Senior Member

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    Surely Peterson, Huber, HHV6 type people would all change their minds if thy found good evidence of XMRV being related to CFS?

    It seems strange to act as if those who do not think XMRV and CFS are related are necessarily biased. If this HHV6 woman has an ill daughter, surely their main concern is finding out the true cause? I don't see any reason to think Peterson or Huber aren't genuine too.

    I've never been a big fan of Dr Deckoff-Jones's blog though.
  7. Jemal

    Jemal Senior Member

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    Those are fair questions Esther12. It's important to remember that concerning these issues we have only heard from Snyderman/Dr. Deckoff Jones. I am sure there are two sides to this story.
  8. floydguy

    floydguy Senior Member

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    What would be your thought if WPI ran a trial on HHV-6, concluded that there was no evidence of HHV6 involvement in CFS and advised patients that taking Valcyte might be dangerous?

    The real problem that I have with these negative studies is their conclusions of what to do or not do going forward. It really, really aggravates me when they feel the need to dictate treatment.

    I am a big fan of Deckoff Jones blog though I don't often agree. We need more people challenging the status quo, not fewer.
  9. eric_s

    eric_s Senior Member

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    Read what Annette Whittemore in her letter to the editor-in-chief (or whoever it was adressed to) of Science Magazine said about what happened with Konstance Knox. Yes, there are two sides and it would be interesting to get more inside information from both sides. Also i don't know why people are doing what they are doing here, but i think it's quite obvious there's not only fair play here. I don't know 100% sure who is right and i am aware that i only have very limited insight, but i think from what we can see it would be naive to think everybody is being fair and honest and all we have to do is sit back and wait for them to fix things for us.

    If they want good evidence, why don't they do as more or less all the other groups that have found XMRV/MRV have done, which means contact the WPI and ask for assistance? This does not mean they would have to agree with the WPI's findings, just let them show them how to do it.
  10. Esther12

    Esther12 Senior Member

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    I wouldn't have any problem with the WPI doing that. If they found evidence of HHV6's involvement with CFS, then I think that they'd be interested in exploring that - because they want to find out what causes CFS and how to help patients get better, like Huber and Peterson.

    I get the impression that some XMRV researchers think thousands of CFS patients are ordering ARVs off the internet and glugging them down, and are terribly worried about that. It does seem unusual for researchers to comment upon treatment decisions the way that has been done with XMRV, but I think it's driven by this fear, and is not something I've been paying attention to.
  11. ukxmrv

    ukxmrv Senior Member

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    I think it is unusual that they comment on ARV access use, as well Esther.

    Usually researchers realise that this is outside their area of expertise and leave treatment options to actual clinicians experienced in that field.

    I find the continued comments about ARV treatment by Retroviral researchers (who may only have a PHD) to be deeply inappropriate.

    After all most XMRV researchers have never seen a patient. They don't know what would possibly work or harm.

    It's not up to them to tell me what to try. It's between my doctor and myself based on my clinical picture.
  12. Cort

    Cort Phoenix Rising Founder

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    I really liked most of Dr. Deckoff-Jones blog.. the problem for me are the inferences that these researchers and Dr. Peterson aren't honest or committed to figuring out what's going on in CFS. The implication that because Dr. Peterson believes HHV-6 causes CFS that he would try to destroy XMRV is just absolutely ludicrous to me. For one thing Peterson tests for and treats all sorts of viruses. He also treats patients who don't have viruses.

    Kristin Loomis essentially did what Annette did. She had sick family members and put her families money into medical research. What she hasn't done or allowed her employees to do is to impugn the reputations of other researchers in the field. (The HHV-6 Foundation, by the way, supports research into other herpesviruses as well.) The idea that the mother of some sick daughters (one of whom I think has gotten much much better) would put her opinion on the cause of CFS above her daughters health - doesn't make sense to me.

    Even though this is Dr. Deckoff Jones personal blog I think this kind of innuendo turns off potential contributors. The WPI's battle over XMRV is really best fought in the research arena -with researchers trying to explain other researchers results by pointing out flawed methodologies, etc. - as Dr. Mikovits did in her response to the last studies.

    Look at the Wikipedia article on the WPI: the biggest section now is on Controversial Statements and Criticism! ...this is a real problem; I have been told that major donors do not want to contribute to non-profits that generate this kind of controversy. I know of one person who who was going to actively engage in raising money from his company and eventually concluded that that would be impossible.

    Here we are with another piece suggesting, through innuendo, that a range of researchers and institutes from the HHV-6 Fdtn, to Dr. Peterson to Dr. Huber and to Dr. Knox - are all tainted.

    Is Synderman officially connected with the WPI? I sincerely hope not. I don't think he's doing them any favors.
  13. Bob

    Bob

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    Yes, it is absolutely impossible to believe that Dr Peterson would want to damage the ME/CFS community in any way.
    He might have a personal bias against XMRV for whatever reason, but I'm sure that he got involved in the Levy study with honest intentions.
    Levy had a bias against XMRV from the beginning, according to the recent media stories, so maybe the two teamed up because they shared the same opinions about it.
    In the media articles, Levy said that he never believed the XMRV research from the beginning. Unfortunately he didn't go into any details.

    Well, it's Dr Jones' business what she blogs about, but I agree that some of her recent comments seem to be coming from a place of emotion rather than objectivity. That's how it seems to me anyway.
  14. eric_s

    eric_s Senior Member

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    Here http://files.me.com/jdj88/tnmi0f, in paragraph on page 2, you can read about Konstance Knox. It's not possible to copy and past, unfortunately. It's not the WPI's fault she did what she did. Ok, this is the WPI's version of what happened, but i'm rather confident it's correct, because you usually don't say something like that publicly if it's not true. That would most probably constitute a criminal offense. What apparently happened is not clean, sorry, and it's not the fault of the person who points it out. Maybe they should have made this public even earlier and also taken stronger measures, i don't know. They are certainly not in an easy situation (the WPI).

    Brigitte Huber, as far as i know, was a presenter at the 2010 Invest in ME conference. She was asked not to talk about her negative study (this is what i heard) and guess what she did at the conference?

    These things have happened. And there might be more we don't know about. It would be great if the WPI could fight all of this off and at the same time not make any mistakes, always stay "in the scientific arena", as you say. But it's certainly not an easy job.

    It might also be interesting to know who writes the Wikipedia entries in question. I think Dr. Snyderman has some interesting data from treating his own illness with ARVs and also (not 100% sure) i think he was part of the recent study where they developped XMRV producing cell lines. So certainly there are also positive contributions to the WPI's cause from his side.
    Btw, what you say about Kristin Loomis and her daughters could also be said about Annette Whittemore. Would she pursue XMRV if that was not the most promising avenue? Why would she fight so hard for flawed research?

    What about Stoye who "lost" Dr. Enlander's samples, for example? There's a number of such things that happened. One should not only look at the WPI, there are plenty of question marks on the other side as well.
  15. Jemal

    Jemal Senior Member

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    According to one of the letters sent to Science, Michael Snyderman is on the WPI clinical advisory committee.

    Anyway, it sounds like you have about given up on XMRV being being a possible cause for ME/CFS? Or am I reading too much into your latest posts?
  16. Sam Carter

    Sam Carter Guest

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    Hi Eric,

    If you ever get a chance to watch the pre-conference, round-table discussion between the presenters at IiME 2010 you'll see that Prof Huber was somewhat marginalised and not given a full opportunity to speak. She tried to bring up the results of her preliminary XMRV research (the research which indicated contamination as a possible explanation) but struggled to get her voice heard and left the meeting midway, clearly upset.

    It was frustrating to watch because she evidently had something important to contribute and an open discussion with Dr. M at that point would have been of great value.

    It's become quite popular of late to knock Prof Huber (I'm not suggesting you are, Eric) despite her long-term commitment to biomedical research, just because she doesn't believe XMRV/MLVs contribute to the pathogenesis of ME.

    When Lombardi and colleagues published their paper in Science she rated the paper as "exceptional" on the Faculty of 1000 website and said:

    "For the first time, we now have evidence that an infectious agent is associated with this chronic disease. It remains to be shown whether XMRV is directly responsible for the symptoms, or induces expression of other cellular genes that lead to an inflammatory response. Regardless, these new findings open the door for therapeutic intervention of this dreaded disease."

    These are not the words of a scientist with a closed mind and it was only when her own research could not reproduce the Lombardi findings that she began to look for alternative explanations.

    Sam
  17. Bob

    Bob

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    I like Prof Huber, and I think she's an honest and dedicated researcher. But at the round table discussion, Huber did accuse the WPI of only finding contamination, simply based on her own research results, which was not a very sensitive way to handle the situation. Judy pointed out that she had also detected antibodies, so it wasn't just a case of finding mouse contamination.
  18. Sam Carter

    Sam Carter Guest

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    Prof Huber didn't "accuse" Dr. Mikovits of anything; she talked only of her own research.

    The specificity of the antibody findings is unknown and XMRV cannot be mouse contamination, but it *may* be cell-line contamination.
  19. Bob

    Bob

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    As far as my memory serves me, she did directly 'accuse' Judy Mikovits of finding contamination. That's definitely how I remember that conversation anyway.
    At the time, the theory was that XMRV was mouse contamination. Huber detected mouse contamination. Now the contamination theories have changed and become more complex, as they regularly do.
    Even if the specificity of the antibodies is unknown, the antibody results back-up the WPI's PCR results, and also gives us a new biomarker whatever the XMRV situation.
    Even without the XMRV results, I think that the antibody results are very significant in themselves.
  20. Sam Carter

    Sam Carter Guest

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    Only if these findings can be replicated, Bob.

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