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First International XMRV conference

Discussion in 'Action Alerts and Advocacy' started by Kati, Jul 21, 2010.

  1. Kati

    Kati Patient in training

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    I had a look at the list of speakers yesterday, and to my dismay, Dr Judy Mikovits will not speak about CFS but Dr Ruscetti will. Dr Ruscetti is not an expert in CFS.

    Else Dr Switzer will talk about assay development. Funny that he didn't find XMRV anywhere- how can he talk about assay development?

    I urge people to speak up as soon as possible to voice our feelings on the selection of the speakers.

    Contact:
    If there is enough of us, maybe we can make things change.
    And let's get Mindy Amy and Hillary involved.

    Thanks, Kati
  2. SOC

    SOC Moderator and Senior Member

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    Has either Dr Ruscetti said anything inappropriate re: XMRV and ME/CFS? If not, we might benefit from having as many mainstream retrovirologists as possible speaking intelligently about ME/CFS.

    It could easily be that Dr Mitkovitz cannot or chooses not to be at this event. I wish we had a dozen of her, but we don't and she has to choose how to spend her limited time.

    I, too, wonder about Switzer talking about assays..... I guess we'll have to see. Surely with Silverman and the Ruscettis there he can't say anything totally idiotic without looking...well... totally idiotic.

    Can anybody find evidence that Switzer has an MD or a Phd? He keeps getting listed as Dr Switzer, but the last time I looked at the CDC he was listed as William Switzer, MPH. He may have a recent Doctorate, or the CDC hasn't bothered to list his doctorate (which seems unlikely).
  3. aruschima

    aruschima I know nothing

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    Kati, please paste the link where you got this information from . Thanks.
    The list does sound strange, Alter also not there ? Hmmmmm
  4. Sing

    Sing Senior Member

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    I'm wondering if this is just the list of speakers they've begun to get lined up, not the whole final list. If it is a beginning, it seems like a good start--what is the story?
  5. CBS

    CBS Senior Member

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    Here is the link to the conference info: http://www.virology-education.com/i..._XMRV/vid/1FF10297-0DC4-5841-64634A68A3EC3EF1

    Invited Speaker information is listed on the 'Program' tab. On the 'Committees' tab you'll see the following list if you expand the Scientific Committee sub-heading:


    Norbert Bannert
    Koch Institute, Germany
    Bill Dahut
    National Cancer Institute, USA
    Rika Furuta
    Japanese Red Cross Osaka Blood Center, Japan
    Stephen Goff
    Columbia University, USA
    Walid Heneine
    Centers for Disease Control and Prevention, USA
    Jerry Holmberg
    US Dept HHS, Advisory Committee on Blood Safety, USA
    Myra McClure
    Imperial College London, UK
    Judy Mikovits
    Whittemore Peterson Institute, USA
    Ila Singh
    University of Utah, USA
    Susan Vernon
    CFIDS Association of America, USA
  6. Kati

    Kati Patient in training

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    Ruscetti is capable enough to present on XMRV, however shouldn't dr Judy get the honors?

    As for Switzer, my thought is this is yet another way to cover up and hide CFS under the carpet. How can someone that has yet to find XMRV, that has received positive samples from WPI but never mentions it and stops the NIH and FDA from publishing a study (or at least delay) present on ASSAY DEVELOPMENT? He didn't find the virus!!!!
    Why isn't the NIH/ FDA presenting on ASSAY DEVELOPMENT since they found the virus? Or Lombardi?

    The CDC really doesn't want to deal with CFS people, and it is in their best interest to cover up and not believe an association with XMRV- they'd have to recognized they have messed up for 25 some years.
  7. aruschima

    aruschima I know nothing

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    Kati,
    I agree with you. Most of us here are still " hoping" that there will be a turn around in attitudes and any body really cares ! Lala Land......
    The hard facts are simple; it is money which makes the world go round and as long as we do not DEMAND attention and our rights, nobody will care to give them, especially if it costs them prestige, power and money!

    I just ask myself, where are the other big players, those who are interested to make money of us, the pharma industries? Why is there silence and where is the planned Glaxo trial gone?
    Just food for thought........
  8. aruschima

    aruschima I know nothing

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    Wait,

    This is a work shop, not a conference "This workshop will be co-sponsored by the NIH and will be organized by Virology Education."

    And the members of this committee are mainly researchers interested in XMRV as new retrovirus, not especially interested in ME/CFS

    Big difference.
  9. Frickly

    Frickly Senior Member

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    The point is that no one would be talking about XMRV if it were not for Dr. Mikovits. Why has she not been invited to speak? How can this organizing committee totally omit Dr. M from the agenda and think no one would notice? XMRV and ME/CFS need to stay an important part of the conversation, not just XMRV and cancer. It will be up to the ME/CFS community to make sure this happens! If Judy and WPI are pushed out by the research community, who else will step up and research XMRV/neuroimmune disease? Nobody.....
  10. Kati

    Kati Patient in training

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    Sample letter now ready

    Thanks to Frickly and Shrewsbury for putting this e-mail together. Please participate and send this e-mail to as many people as you can. Let's make a wave and make sure they know we are watching.

    The 1st International Workshop on XMRV , co-sponsored by the NIH and organized by Virology Education, will be held on September 7, 2010 at the National Institutes of Health in Bethesda, Maryland, USA. The objective of this scientific workshop is to assemble an international group of scientists, physicians and epidemiologists to present and discuss the latest XMRV studies, including topics such as virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs.

    While we at XMRV Global Action are very excited about the workshop, we believe the list of invited speakers is incomplete and it is imperative that Dr. Judy Mikovits of the Whittemore Peterson Institute be among the invited speakers. We feel that it is incomprehensible to omit the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with ME/CFS.

    The list of invited speakers as of today, July 22, includes:

    Dr. Kate Bishop, NIMR, London, UK - Host Restriction Factors
    Dr. Sam Chow, UCLA, Los Angeles, USA Viral Integration
    Dr. John Coffin, Tufts University, Boston, USA Basic Virology
    (Keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA Prostate Cancer
    Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA Animal Models
    Dr. Ila Singh, University of Utah, Salt Lake City, USA Pathogenesis
    Dr. William Switzer, CDC, Atlanta, USA Assay Development
    Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA Chronic Fatigue Syndrome
    Dr. Ellen Sparger, University of California, Davis, USA Vaccine Development
    ( http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0 )

    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 workshops 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, Dr. 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,


    Other people to send this to... Kathryn Sebellius, Wanda Jones, Obama's scientific committee, your congressman. Let's make sure there is good science happening. Our future depends on it.
  11. VillageLife

    VillageLife Senior Member

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    Dr Mikovits is on the Scientific Committee, I think she'll get a chance to speak, im sure she will.
  12. Kati

    Kati Patient in training

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    Villagelife, don't count on it. Believe me that there is a lot of politics going on, and the goal is not to discuss much of the CFS and its association with XMRV.
  13. Countrygirl

    Countrygirl Senior Member

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    It sounds to me, Kati, as if Dr Judy could have been cold shouldered and we all need to act fast to bring this situation to everyones' attention, if this is so. We need to raise the dust over this. This could mean the government is trying to severe the link between XMRV and ME. We cannot let this happen.

    C.G.
  14. Frickly

    Frickly Senior Member

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    I emailed Dr. Mikovits and asked if she would be speaking and she is "not invited". How can you have an International XMRV Workshop and not invite the person to speak that started this all. No one would be discussing XMRV if it were not for her. We have to make sure this committee knows that we noticed and it is not ok.
  15. V99

    V99 *****

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    How can she be on the scientific committee and not be invited?
  16. Frickly

    Frickly Senior Member

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    She is not on the agenda and will not be invited to speak.
  17. SOC

    SOC Moderator and Senior Member

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    Thanks for finding that out, Kati! This is completely unacceptable. I'm glad you're on top of it.
  18. V99

    V99 *****

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    Don't get me wrong I think Ruscetti is fantastic, but how can they allow someone with little experience of CFS talk about it? How can Mikovits be an advocate? She has only done the same thing that Klein has, and he's presenting on prostate cancer. I guess unless they pull their bigoted fingers out of their arses, Mikovits will have to ask the hard question when the CDC guy talks about assay development. Is it jealousy, CFS predjudice or sexism???
  19. SOC

    SOC Moderator and Senior Member

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    Has anyone forwarded this info to someone in the media?
  20. VillageLife

    VillageLife Senior Member

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    for goodness sake, dr Mikovits not being invited is DISGRACEFUL!

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