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April 7/8 NIH State of Knowledge Conference - watch online to show our support!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Apr 7, 2011.

  1. eric_s

    eric_s Senior Member

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    Again i only have audio :headache: I'm grateful they are holding this workshop, but wouldn't it be possible to provide reliable video and audio to 300 or 500 people? This does not sound like such a huge audience to me.
  2. ukxmrv

    ukxmrv Senior Member

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  3. ukxmrv

    ukxmrv Senior Member

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    I'm worried about the "pedigreed negatives" for any study like this and I am not the only one. At a previous meeting it was brought up how hard it is to find this virus and how prevelant it may be in the general population.

    In addition Coffin brought up the HIV test and how two are needed.

    It maybe that XMRV testing will need to be examined in the light of these processes and further finetuning done rather than a walk away from the area
  4. ukxmrv

    ukxmrv Senior Member

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    The problem with Coffin, Stoye, Towers and all the anti-XMRV crowd is that they are not looking for other retroviri and general retroviral activity in patients. They are spending precious funding trying to disprove XMRV (and very badly in my opinion).

    If they were serious about retroviral activity in ME patients then they would be carrying out projects looking for that. They aren't. That is what makes me suspicious toward them when I started looking at this from a neutral, hopeful and trusting perspective.

    I had hoped that they would help us. Firstly by bringing great science methods to bear on XMRV so we could know the truth. Then if that didn't work out by searching for other viral causes. They have failed to do either and they have created an adversarial atmosphere and are just fighting a corner they backed themselves into.
  5. eric_s

    eric_s Senior Member

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    In regards to having "all the right intentions" i would also say that i don't know those people's intentions. Nobody knows besides themselves. So i think i will not try to guess their intentions and just look at what they are doing.
  6. Rrrr

    Rrrr Senior Member

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    one of the speakers today talked about how you collect the samples in any study will dictate the study results. if you collect them one way, the results will be A, if you collect them another way, the results will be B.

    i really think there are SO many ways that other labs can *not* follow the WPI protocol for the study that will cause them to not find xmrv.

    we need an exact replication study.

    and recall: cleveland clinic and the ruscetti team also found xmrv, not just wpi.
  7. shannah

    shannah Senior Member

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    April 8, 2011, 9:21 AM ET.At NIH Chronic Fatigue Syndrome Conference, XMRV Debate Heats Up.

    By Amy Dockser Marcus

    "Stay tuned, Alter said, for this critical piece coming down the pike.Scientific conferences can sometimes be boring events, filled with talks that run over the allotted time, text-dense slides and debate that is so civil it is often hard to tell there is disagreement. But thats not the case when the topic of the virus XMRV is on the table.

    At the NIHs two-day state of the knowledge workshop on chronic fatigue syndrome, which started yesterday, researchers, scientists, government officials, and patients saw two scientists square off in heated battle over whether XMRV plays a role in CFS.

    On one side was Judy Mikovits of the Whittemore Peterson Institute, which led the scientific team that reported a link between the retrovirus XMRV and CFS in a 2009 paper published in the journal Science. She presented both published and unpublished data on how patients make antibodies to XMRV and ways the retrovirus leaves immune dysfunction footprints in the blood. She suggested its time to translate some of the findings into ways to help patients.

    On the other side was John Coffin of Tufts University, presenting unpublished work done in his lab and at NCI suggesting that XMRV was generated during lab experiments growing human cancer tissue in mice and then got into patient samples through contamination.

    Emotions about XMRV have run so high for the past 18 months that after Coffin finished his talk, he asked for extra time to make a personal statement. He spoke mainly to patients, some of whom have called into question the motives of the scientists studying XMRV. Coffin said that scientists went into the studies eager to help and werent directed by their employers on whether or not to find XMRV. And they dont have a commercial interest in the outcome. The statements are not only inaccurate, they are painful to read, he said.

    Still, when asked during the heated post-presentation discussion session for his thoughts on the next scientific steps to be taken, Coffin declared that while he was still willing to consider an infectious cause for CFS, I see the next step leaving the virus known as XMRV behind.

    The referee in the fracas was Harvey Alter, part of a different group of scientists who found a family of retroviruses (to which XMRV also belongs) in patients with CFS. Alter said that he found Coffins data about the origins of XMRV very convincing, but questions the next step in Coffins suggestion, that the XMRV findings in patients are the result of contamination.

    Alter pointed out that in the work he is involved with, the scientists constantly worry about the possibility of contamination, but have used multiple detection tests including ones developed by Coffins group and so far havent found any signs contamination has occurred.

    Government studies are underway in an effort to resolve the dispute. NCI launched a small study on 30 patients who previously tested positive for XMRV and are now providing more blood samples and undergoing extensive work-ups. A federally led scientific blood working group studying the potential impact on the blood supply is testing for XMRV in CFS patients and in healthy controls.

    But Alter told the audience that he is waiting for the results of a major NIH-sponsored study, led by virus hunter Ian Lipkin, that will take blood from a large number of patients and healthy controls at multiple centers around the country and test for XMRV.

    Stay tuned, Alter said, for this critical piece coming down the pike.



    http://blogs.wsj.com/health/2011/04...gue-syndrome-conference-xmrv-debate-heats-up/
  8. Mark

    Mark Acting CEO

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    What do people think of the experimental "LiveBlog" feature? On the home page now...

    http://phoenixrising.me

    I was hoping to recruit people to throw in some comments on the feed unfortunately I can't control the feed to do so yet...hopefully we'll get that fixed later. And then we can put a kind of collaborative live report together...it's all a bit experimental at the moment of course but could become a good feature...
  9. aquariusgirl

    aquariusgirl Senior Member

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    Anyone know when Lipkin's results are expected?
    These ppl...NIH/COlumbia...don't seem to have much of a sense of urgency....
  10. ukxmrv

    ukxmrv Senior Member

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    You've done a great job Mark. I am so brain dead today I could not even work out how to calculate the USA/UK time even though I had examples in front of me.

    Your blog has really helped.
  11. Sasha

    Sasha Fine, thank you

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    Such a lot of interesting stuff but I thought Dr Klimas's comment after Dr Bateman's talk was interesting - about how cytokine research may have showed such a lack of replicability because the methods for measuring them have only been good in the last couple of years. She seemed to be saying (with Dr B agreeing) that you could basically chuck out any cytokine levels research that was more than a couple of years old and that after that there was good replication.

    I've thought for a long time how disappointing it has been that cytokine stuff would look good in one study and then it would go down the pan in the next. Maybe this is the answer.
  12. Sasha

    Sasha Fine, thank you

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    Good for that patient (Bob, didn't catch his surname) doing a bit of table-thumping to express our impatience about getting trials underway now (today!). I think it's been good to have just the scientists discussing stuff so far since it's each other that they've got to get up to speed but I thought that was a good interlude to get people to sit up and think about the urgency of this from the patients' point of view. He was very brave to get up and speak about such distressing stuff - it's really not easy.

    I hope that sense of urgency gets reflected in the big discussion later on.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Saw Rich at the Conference!

    Hi Rich,

    Thanks so much for being at the conference. Sergio and I are sitting here with the conference on the TV and it is great to see you sitting behind Nancy Klimas. :victory: We are amazed to see the calm expression on your face when at times you must be sticking your fist in your mouth to keep from talking!

    We are routing for you and wish that we were there to speak, as patients, and say that the treatments that have helped us the most--such as methylation therapy--have not even been mentioned as either possible clincal studies or treatment options!

    Glad to see you are in a "good camera position!" It makes us feel like we are in the room too.

    Look forward to your comments,

    Sushi
  14. Camilla

    Camilla

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    I think so far many of the talks have been great. Right now Pat Fero is talking, and I'm trying to follow, but I find it all very chaotic...
  15. liquid sky

    liquid sky Senior Member

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    Do you really think he treated Mitkovit's work with any respect? Did he even attempt to answer her questions?
  16. LJS

    LJS Insert Witty Comment Here

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    Dr. Alter just gave a absolutely awesome summery of the science that was pretty humorous at times. I really like him as a person, he is very cool and collected and looks at the science with a very open mind. I really hope someone puts the discussion on up on youtube. Since the government is shutting down today it may be a few weeks before the NIH posts this in the video archives.

    I was really stuck by Dr. Mikovits comments in the discussion session a few moments ago. She made some attacks on Dr. Coffins that really over stepped the acceptable norm of discussion and someone else had to step in and keep her in check. This really hurts her cause and reputation amount scientist.
  17. kday

    kday Senior Member

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    Judy shouldn't get so angry, but who is that neurologist duck?
  18. LJS

    LJS Insert Witty Comment Here

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    I completely agree she needs to speak in a cool, calm and collected manor. This is extremely damaging to her and the WPI's reputation and is frankly childish.

    Yea I was wondering who that neurologist is, he keep saying throughout the day that it is the brain but you could tell many people in the room did not take it very seriously.
  19. eric_s

    eric_s Senior Member

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    Who's study did she just call flawed? Coffin's or Natelson's? I hope not Natelson's.

    I like Alter too. Many of the other speakers don't seem to be able to cooperate and consider the work of the others, they just push their own point of view from their own area of specialisation.

    It's such a shame they can't get the stream to work correctly (or is it only me?). I have to get up every couple of minutes to restart the player and i didn't get any video today. This should be possible to get right.
  20. Sasha

    Sasha Fine, thank you

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    I really liked the point that Dr Mikovits made about the need for antiviral (not necessarily antiretroviral) clinical trials now because it's not OK to wait three years (yikes!) until the Lipkin study is finished because there's already plenty of evidence that it's the co-infections that are making people sick and are treatable, regardless of XMRV.

    I wish she had made the point without getting angry and speaking dismissively of other people's work. It must be immensely frustrating for her at the moment but I agree, there's a better way to make those points.

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