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1st International Workshop on XMRV: ACT NOW

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Frickly, Jul 22, 2010.

  1. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    It's not necessarily a bad thing

    Much as I would have liked to see Dr Mikovits on the speaker lineup, I'm not sure that it will actually make any difference to the overall message coming out of the conference.

    In some respects it might actually be a good thing, because if the media latch onto the seriousness of what they are told by the likes of Dr.s Coffin, Singh, Silverman & Ruscetti, they will have an obvious "go to" in Dr. Judy Mikovits, in order to develop their stories ....... in fact, she might have much more freedom to speak as a "non speaker" than vice versa - if you get my drift. :confused:

    Whilst we might wish to "honour" Dr. Mikovits with a place on the conference platform, there's clearly no room for sentimentality in the cold world of scientific research :worried:

    TGOP :Retro smile:
  2. V99

    V99 *****

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    But there is room for politics
  3. Rrrr

    Rrrr Senior Member

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    To everyone who is on the fence:

    Please email the XMRV workshop/conference organizers and ask that Judy Mikovits, the scientist who discovered XMRV's link to CFS, be invited to speak on a plenary at the conference. At present, she has not been invited to speak anywhere at the conference.

    Rrrr
    _______

    We are urging all our members to send an email to the Science Committee contact, Wilco Keulen wilco.keulen@vironet.com from Virology Education, and Dr. Francis S. Collins francis.collins@nih.gov, Director of the NIH, to request that an invitation be extended to Dr. Judy Mikovits as a featured speaker. We also encourage you to send this message on to your friends and family. It is up to our community to ensure that ME/CFS and XMRV continue to be an important part of the conversation.

    Below you will find a sample letter that you are welcome to use.

    Thank You!

    (sample letter)
    To all involved in the 1st International Workshop on XMRV,

    Congratulations on mounting the 1st International Workshop on XMRV. Bringing researchers and medical professionals together in this way is a critical step in understanding XMRV and its impact on public health and in moving the state of the science forward.

    When this workshop was first announced I noticed Dr. Judy Mikovits was included as part of the workshop’s Scientific Committee. However, I was very surprised to see that she was not one of the speakers, let alone not the keynote speaker.

    It was the October 2009 publication in Science of Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome that reignited and expanded global interest in XMRV as well as the role it might play in disease after its initial discovery in some prostate cancers by Silverman and Klein et al in 2007.

    This paper, linking XMRV to ME/CFS, was authored by scientists from the Whittemore Peterson Institute, National Cancer Institute and the Cleveland Clinic. The National Cancer Institute is represented by Dr. Frank Ruscetti and the Cleveland Clinic is represented by Dr. Robert Silverman. However, Dr. Judy Mikovits from the Whittemore Peterson Institute is nowhere on the program. The omission of the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with CFS is incomprehensible.

    Furthermore, while I welcome and encourage the involvement of the CDC in research into XMRV, Mr. Switzer, the guest speaker on Assay Development, to date has been unable to detect XMRV in any blood samples. While exploring why methods do not work contributes valuable information to the field, so does information on methods that do work.

    The original Science paper, along with Response to Comments on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” on methods of detecting XMRV, demonstrate that Dr. Mikovits and Dr. Ruscetti are the leaders in this area right now. They have published studies detecting XMRV in blood and other studies have corroborated these findings. Drs. Mikovits and Ruscetti should also be presenting on "how to find XMRV” and Assay Development.

    I do not believe the stated objective of the 1st International Workshop on XMRV “to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies” can be accomplished without including Dr. Judy Mikovits of the Whittemore Peterson Institute among its scheduled speakers.

    I will be following this conference schedule with great interest as it develops. I request, and strongly urge, that Dr. Judy Mikovits be invited to be an important part of this conference and its presentations.

    Sincerely,
  4. eric_s

    eric_s Senior Member

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  5. V99

    V99 *****

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    Thank you Eric. Great bit of news

    Proves the stupidity of saying she cannot talk. Well if she's the only one, you would have to let her. It has nothing to do with patient advocacy nonsense.

    Oh and no XMRV in UK. all I will say to that is ba ha ha, in your face.
  6. V99

    V99 *****

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    Unless Huber has changed her method I don't know what she will add. Also just want to point out how preliminary her HERV study is. At the UK conference she had only looked at about 5 patients, please correct me if I'm wrong. Talk about mentioning a study before publication, how about after it's even started. Of course no one slated her.
  7. eric_s

    eric_s Senior Member

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    Some people might get to feel like this

    [​IMG]
  8. eric_s

    eric_s Senior Member

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    And there is Lo speaking, too. This will be the Alter study, right?
  9. V99

    V99 *****

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    Or is it only the Lo side? I have no idea if it's one or two.
    But the recent news stories and this conference again make me think it could be 2.
  10. eric_s

    eric_s Senior Member

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    Yeah, right.
    He's the only one not to call it XMRV, he leaves away the "xenotropic". Don't know if that means anything.
  11. shrewsbury

    shrewsbury member

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    I took snips of the program for those who can't read the program link.

    Rats, can't figure out how to get them on here - so sorry. I got feedback they worked on XGA

    Here's what I can type right now: Sept 8

    Session 4 Chronic Fatigue Syndrome
    Chairs Dr John Coffin & Dr Judy Mikovits

    11:15 F Ruscetti

    11:45 B Huber

    12:00 M Hanson

    12:15 Detection of MLV-related virus gene sequence in blood of patients with chronic fatigue syndrome and healththy blood donors S Lo

    12:30 am Detection of infectious XMRV in the peripheral blood of chronic fatigue syndrome patients in the United Kingdom J Mikovits


    It's great to see J mikovits included as both a program c0-chair and the anchor presentation. Thanks to all who wrote!
  12. V99

    V99 *****

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    It must mean something
  13. VillageLife

    VillageLife Senior Member

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    She's co-chair thank goodness! :)
  14. leaves

    leaves Senior Member

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    YaY that is a VERY good sign :) I am so glad.
  15. Kati

    Kati Patient in training

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    I wonder what Brigitte Huber will have to say this time around? :tear:
  16. leaves

    leaves Senior Member

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    heheh :) that is going to be AWKWARD....
  17. VillageLife

    VillageLife Senior Member

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    Doctor M is a star!
    She Is fighting for us.
    she once said to me in an email, we are all Heros because of what we have been through.
    I quickly replied telling her that she is the hero.

    She has a heart of gold and so does Annette and Dr Silverman who discovered xmrv, They are very good people and someone was watching over us. We have wonderful people on our side. :)
  18. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Matlock, Derbyshire, Uk
    The big compromise

    Clearly, he's not referring to XMRV specifically -
    The title says "detecting Murine Leukemia Virus related virus gene sequence" which is not (completely) the same thing

    I suspect that this gives us a big hint at the compromise that has been made in the Alter / Lo paper, in order to get it to publication and to save the CDC from total embarrasment. :ashamed:

    ...............Discuss :D
  19. JT1024

    JT1024 Senior Member

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    My guess is Huber is going to play games with semantics.

    I've had it with the games. I think patients need to tell her that!
  20. V99

    V99 *****

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    Well he says detection of MLV-virus related gene sequences. That doesn't rule out XMRV, and very quickly means multiple. I would say it's no compromise.

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