The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Science: No Meeting of Minds on XMRV's Role in Chronic Fatigue, Cancer

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CBS, Sep 21, 2010.

  1. CBS

    CBS Senior Member

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    One take on the 1st International XMRV Conference as published in Science (9/17/2010).

    http://www.sciencemag.org/cgi/content/summary/329/5998/1454


    Who's interests are served when a "a zone of chaos" is perpetuated? Is it really that hard to create the organization we need to answer the key questions about the role of XMRV and MLV's in ME/CFS?

    It was ironic that when Dr. Stoye presided over the post conference Q & A, he stressed that this was not going to be about politics when it appears that politics is still the largest obstacle we face.
     
  2. BEG

    BEG Senior Member

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    Can someone download the full text?
     
  3. CBS

    CBS Senior Member

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    Had anyone else heard that the working group was looking at four samples from the WPI and that there was confusion over the results?

    I could have easily missed it as I've been having a rougher than usual week
     
  4. Kati

    Kati Patient in training

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    Well said Shane. It seems that chaos is a great way to slow things down even more.
     
  5. Sasha

    Sasha Fine, thank you

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    I think it was Dr Coffin who commented during the broadcast Q&A that the XMRV research was currently "in a zone of chaos" and that it was appropriate to such an early stage of research when methodology was developing and loads of scientists were all piling in to the new field. I think he compared it to the early days of HIV research and was talking about it as a normal phase for groundbreaking research on something very new to go through. I don't think he thought of it as a bad thing (though of course it would be if we never got out of the zone!) - just a developmental stage.

    The use of the word "mired" in the Science piece does imply "stuck" which is not my interpretation of what Dr Coffin said - quite the reverse.
     
  6. Cort

    Cort Phoenix Rising Founder

    Can anyone get the full text to this? Dr. Coffin, somewhat unfortunately, came up with a very catchy phrase......After looking at the abstracts I feel better about the Workshop than after watching the Q&A.
     
  7. CBS

    CBS Senior Member

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    The only thing that is more controversial is the notion that CFS is a real disease. There is not one ounce of evidence that XMRV/MLV's are more solidly linked to prostate cancer than they are to CFS.

    This is a moment in time where scientists and government agencies are struggling to face the very real possibility that once again they have repeated the mistakes of the past (eg., MS is not a real disease) only this time, they did in on an even larger scale and the agencies positions were even more deeply entrenched.

    Bureaucrats and government scientists are acting as though they are struggling with how to avoid a patent backlash and a public crisis of confidence. In brief, they can't. It's too late for that, they had that chance and they repeatedly failed to act. I'd suggest they take the lead of our local National Guard unit that over this past weekend caused a fire that scorched four homes and lead to the evacuation of 1600 residents in the SLC valley.

    To paraphrase the National Guard's response:
    "The (CDC, NIH, FDA) aims to protect (our citizens), not put them in danger. We failed in that.”

    “We say we’re sorry. We’re very sorry.” “It’s a systemic failure on our part.” “We’re going to fix it now.”
    Not much more to be said after that except that now they're treating this with the appropriate urgency and making all necessary resources available.

    At this point, the only way out for the government agencies is to not cause additional pain and harm by trying to cover their sorry backsides.

    Sasha,

    I agree with your take on the tone and intent of Dr. Coffin's use of the phase "zone of chaos" as an expected phase that accompanies a new discovery. My concern is more with the allocation of resources. That is where politics takes front and center stage. The primary concern of our governmental agencies appears to be patient backlash, not funding the necessary studies. Here I am referring to the comments in the Q & A session that the NIH has no plans to allocate funds and they are waiting for applications.

    Nearly all of the research to date has come via labs that have redirected funds from other projects and chosen to study XMRV/MLV's independently. The only large scale effort has been the blood safety study which is very much a CYA effort.
     
  8. George

    George waitin' fer rabbits

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    I really believe deep down in my most doggy heart that the Q and A was about miss direction of the media. Many of the questions that were asked during the Q and A are answered in the abstracts. I find it disingenuous that questions were asked and not answered in the public forum when the same questions had been answered via the presentations the day before or even the same day. For instance the "naive" guy who kept going on about animal models and yet in the abstracts there are two animal models. The monkeys and a mouse model. The questions about ARV trials which have already begun in a tiny trial of 3 people and are ongoing per the abstract but for some reason where argued vehemently by Coffin and others. (snort and eye rolling) And Myra, well Myra was just being a . . .well Myra. (more eye rolls and another snort)

    I haven't had a chance to compare the Q and A transcript to the abstracts but just off the top of my head here are two examples of the scientist in that room being disingenuous with the public. I understand the need to handle the media but I think that in handling the media many people (scientist, researchers, doctors, ect) are flat out lying to a very important group, The Patients. If they truly want patients to lay off the personal drug trials then they need to provided drug trials. The brave and the near dead will sign up immediately and those of us who can afford to wait a little while longer will. Maybe then Dr. Coffin can hang up his cleric robes and stop preaching to the choir. Cause the rest of sinners are on the street corner trying to get our ARV fix.
     
  9. Sasha

    Sasha Fine, thank you

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    I didn't know what to make of the Q&A. But I think that what the researchers felt able to say in the public domain and what they already know about XMRV based on as-yet unpublished data are two very different things; even Dr Mikovits flat-out refused to answer a question from Mindy Kitei (about ARV trials?) and I think Dr Mikovits has only our best interests at heart.
     
  10. Sasha

    Sasha Fine, thank you

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    Hi CBS - I agree it's bizarre at this stage not to see the NIH throwing millions at this, even if it's just to pump-prime for big pharma.
     
  11. Esther12

    Esther12 Senior Member

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    No. Sounds kind of ominous to me - but I am still an XMRV sceptic (however much I'd like not to be).

    If the four WPI samples had been consistently picked out by just some of the testers, surely that would be a clear indication that those getting negatives were in error.

    In the same way though, if the WPI samples were getting the same results as the controls, that would be a clear indication that the WPI was in error.

    I wonder what results would be confusing?
     
  12. CBS

    CBS Senior Member

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    Hi Esther,

    I'm not an XMRV skeptic, more of a political realist (at least that's what I'd like to think). Getting the chance a couple weekends ago to sit down with Dr. Singh (and Cort) and talk about her soon to be published work does not leave me feeling like there's nothing here. I think we still have some ways to go before we know exactly what is being found and it's wider implications and I guess that's the part that's frustrating, the incongruity between the already completed science and the laissez-faire attitude of the governmental agencies. The DHHS is acting like this is 'simply' a case of a million people with "chronic fatigue."
     

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