1st International Workshop on XMRV

Discussion in 'Fibromyalgia Main Forum' started by arabella1776, Jul 22, 2010.

  1. arabella1776

    arabella1776 New Member


    Here is the information that was put together on the XMRV Global Action, with a sample letter ready for you to cut and paste and send to the XMRV conference committee, Obama's scientific committee, Kathryn Sebellius, Wanda Jones, and maybe even your congressman. Your voice is important even if you are not from the US, this affects us all.


    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. Special thanks to Shrewsbury and Frickly for their hard work.

    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, 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 notwork 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,