1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

1st International Workshop on XMRV: ACT NOW

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

  1. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    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
    • Mr. 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 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,

    http://www.facebook.com/home.php?sk...clinical-and-public-health-impli/421411181796
  2. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    I'm not saying you're not right here, but... Frank Ruscetti from the NCI will be presenting about ME/CFS... From what I heard from his presentation that had a link here (that was removed), it was a very good presentation and he, I think, really believes that XMRV is connected to ME/CFS. He is a good presentor, too, I think.
    Dr. Mikovits is my hero, and also I really think that she should get the noble prize (along with Dr. Silverman, Dr. Singh and perhaps others), but it might be even better for us if the scinetists there would hear a presentation by another scientist who believes that XMRV is connected to ME/CFS - as most of them probably knows that Dr. Mikovits do believe in that - and also, to a sceintist that is currently works in the NCI, as I think many scientists sees private instituteses, especially those who are dedicated to - Oh, No, WTF?! - heal their patients, as something bad or at least less good.

    However - If Dr. Mikovits has some signifcant stuff that she can present and that Dr. Ruscetti won't present, I think she MUST present in this workshop. She is, and there is no question whatsoever about it, one of the persons that knows the most about XMRV in the world.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    4,887
    Likes:
    5,353
    USA
    [my bolding]

    As far as I can determine, Mr Switzer has not yet earned the honorific, "Dr". You might want to reconsider using it in your letter, even though he's listed that way on the speaker list. It would make the point that the CDC is not putting their best and brightest (or best educated, anyway) on this work.

    I may be wrong. However, as of this moment, at least he is listed as William Switzer, MPH on his CDC biography.

    I, for one, don't choose to give the man any more credit than he is due.
  4. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    I'm so with you on this. However, as the organizing committee listed him as Dr, we decided to do the same to keep the focus on getting Dr Mikovits to be one of the invited speakers.

    A few people I know of are concerned about this. The CDC's webpage, updated November 10, 2009, only gives an MPH, Master of Public Health, as his degree.

    http://www.cdc.gov/about/opportunities/careers/microbiologists.htm

    and have thought it worthwhile pointing this out to the organizers of the XMRV workshop

    Diana Nierop (diana.nierop@vironet.com), the logistics contact person; Wilco Keulen (wilco.keulen@vironet.com), the scientific program contact person; and cc'd Francis Collins (francis.collins@nih.gov) of the NIH.
  5. caledonia

    caledonia

    Messages:
    2,657
    Likes:
    1,261
    Cincinnati, OH, USA
    I sent the letter.
  6. OneWaySurvival

    OneWaySurvival

    Messages:
    60
    Likes:
    10
    USA
    Thanks for posting this sample letter, Frickly. It's an excellent letter and I'm considering whether to send it, but I first have this nagging question to deal with. Do we (as a patient/advocacy group) know for sure that Dr. Mikovits hasn't already been invited and perhaps had some strategic reason for declining? I really can't think of a reason she wouldn't accept a speaking invitation to this historic XMRV conference, so odds are this is, in fact, a royal snubbing...but has anyone here (who is in regular contact with the WPI) asked Judy to make sure, before we open the floodgates of requests to the organizing committee to get her invited?

    If I find out this is a snubbing, all I can say is "it's on."
  7. OneWaySurvival

    OneWaySurvival

    Messages:
    60
    Likes:
    10
    USA
    Oops, so I just figured out that my concern is already being discussed rather earnestly in another thread on the Action, Alerts, and Advocacy section. Sorry about duplicating! I would love to have some confirmation from WPI so I know how to proceed here. I guess I'll follow the other thread or wait for some more news from WPI.
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I think we should ask Judy first. One would think she would be asked to speak, that's for sure. Some snubbing may be going on.

    On the other hand if they're going to have someone speak on CFS much better to have Dr. Ruscetti, with his 240 publications and renown in the field, to do it than Judy Mikovits with her 40 or 50 or so; they will listen much more closely to him. It's not as easy to dismiss something coming from him as from Judy or most other researchers. I would think he is probably the most distinguished researcher to ever speak for us. Glad to see him on the agenda.
  9. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Do you really think that Ruscetti would want to take away Mikovit's thunder by doing the talk? His knowledge on CFS is also limited compared to what Mikovits has built up.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    See my post on other thread. I agree with Cort, but I gave more details.

    Tina
  11. SOC

    SOC Moderator and Senior Member

    Messages:
    4,887
    Likes:
    5,353
    USA
    This is getting mighty confusing running the same issues in several threads. Is there a way to combine them?
  12. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    In response to your question, Kati and I both contacted wpi and it was confirmed that Mikovits is not invited to speak.

  13. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    The organizers of the 1st International XMRV Workshop will not allow Judy to speak, "Because she is a patient Advocate". This is from the organizing committee! If Judy were allowed to speak, she would.
  14. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    See I agree with the fact that Dr. M is being dissed, subtly. Honestly she hasn't earned her wings so to speak in comparison to Coffin, Ruscetti and Silverman. And I agree that she has way more cred than Switezer, and Bishop. But I'd like to have Dr. Mikovits Blessing before I write a letter in her name. Nothing like doing something good and having it land right back in your lap. That's all I'm sayin'. Just get an O.k. from Dr. Mikovits and send that letter everywhere!

    I would like to point out one other thing. Anybody notice "Vaccine Development, Dr. Ellen Sparger" Why is a vaccine specialist going to an XMRV conference????????????

    If the Ruscetti's are right and CFS is a combination of XMRV + another MLV (possibly from a vaccine transport) and is triggered by base virus like EBV then maybe that's why the Ruscetti's are speaking in regards to CFS instead of Dr. Mikovits. ?????
  15. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Unfortunately, Ruscetti is presenting because Mikovits has not been allowed to, not for any other reason. I doubt he is impressed.

    You should contact the WPI to help you decide if you would like to write anything.
  16. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    I did, wrote the Ruscetti's too.

    I think you're doing the right thing V, advocacy never hurts. And you've set it up to protect Dr. M I think it's a good thing. Not that you need my approval. (wag, wag, wag) I'm just sayin' so you know that I agree in principle.
  17. SOC

    SOC Moderator and Senior Member

    Messages:
    4,887
    Likes:
    5,353
    USA
    I've heard that Dr M was not invited to speak and that she has not be allowed to speak, which are different.
  18. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Yes, not is invited to speak, because they are claiming she is a patient advocate, and therefore is not allowed to.
  19. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I do genuinely believe everyone wants to support all of these things, it's just that some believe it to be too risky others do not.
  20. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    It would be appropriate for Ms. McCleary and Dr. Vernon, as our advocates, to jointly write an open letter to the conference organizers protesting Dr. Mikovits' exclusion from the speaker lineup.

See more popular forum discussions.

Share This Page