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Campaign to have Mikovits speak at the XMRV conference!!!

Discussion in 'General ME/CFS News' started by V99, Jul 23, 2010.

  1. SOC

    SOC Moderator and Senior Member

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    Let me be clear -- I'm not asking anyone not to act on something they feel strongly about. I'm just saying I'm not joining this particular battle, because I don't feel it's fundamental to our cause.
  2. srmny

    srmny

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  3. shrewsbury

    shrewsbury member

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    I agree that Frank Ruscetti is a distinguished researcher and an appropriate invited guest speaker. However, to me, it would make sense that Judy Mikovits would be the keynote speaker and the person speaking on CFS while Frank Ruscetti spoke on Assay Development.

    I would say serious snubbing is going on. Like Thomas said - the current situation is like having the 1st polio conference and not inviting Salk to speak.

    The main point, though, that Judy Mikovits was not invited to speak still stands. There are a couple of threads so it was easy to miss, but early on in the first thread, Frickly said she had confirmed the fact that Judy Mikovits had not been invited to speak with Judy herself.
  4. V99

    V99 *****

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    Also McClure, and she hasn't published a study fining it yet.
  5. SOC

    SOC Moderator and Senior Member

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    She is well known because of her research with XMRV in prostate cancer. It's not all about ME/CFS.
  6. V99

    V99 *****

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    I ment she is like Switzer, i.e.. cannot find XMRV full stop, as of yet.

    the Mikovits issue is separate, and that is all about ME/CFS
  7. SOC

    SOC Moderator and Senior Member

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    Whoa! Are you say she's not published any finding of XMRV in prostate cancer patients, either? Has she published nothing about XMRV other than the Wessely paper? If so, her inclusion is inexplicable.
  8. V99

    V99 *****

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    Nothing. She has only mentioned on a radio program that she is now finding it in prostate cancer patients.

    Just to clarify, McClure is not speaking, she is on the scientific committee.
  9. SOC

    SOC Moderator and Senior Member

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    Sheesh! :rolleyes: Then what is it they think she knows about XMRV?

    Oh yeah [smacking forhead]. This is getting very confusing.
  10. V99

    V99 *****

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    There are only a handful of people who can get involved in this research, McClure doesn't need much to get in.
  11. VillageLife

    VillageLife Senior Member

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  12. V99

    V99 *****

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    :hug:Yep, still positive.
  13. Frickly

    Frickly Senior Member

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    FYI: 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. SOC

    SOC Moderator and Senior Member

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    If this rumor is true, it's a clear explanation. They want someone to speak who does not have the appearance of bias. That does matter in the scientific world. It will give ME/CFS more street cred in their little world if Dr FR does the speaking. Not fair to Dr M, of course, but probably better for us in the long run. I wish for her sake, that it isn't true, but that doesn't make it not true.
  15. V99

    V99 *****

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    It is not about street cred, it is the perception she is a patient advocate, but who at that conference is not a patient advocate? It's simply an excuse to marginalise the WPI, and the CFS issue.
  16. Sean

    Sean Senior Member

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    This is an extremely important point. We could be in real danger of being seen to politicise the scientific process too much if we overdo the pressure.

    I originally was not happy with Mikovits being snubbed. But upon reflection I now agree with Cort and SoCFS. I have no problem with Ruscetti being our 'representative' for this conference. He is right at the top of his field, cannot be dismissed, and was an author on the original Science paper with Mikovits. He is fully aware of what is happening and what is at stake. He also has the distinct advantage over Mikovits of not being seen as too identified with a particular cause, of not being too political. Mikovits has made some strong public statements and criticisms that could be held against her (rightly or wrongly, but we are talking politics here, and it counts in science like everywhere else). The most outspoken people are not always the most politically effective advocates, no matter how right they are. (Just to be clear, I am in no way downplaying the outstanding work Mikovits and her team have done. They are real heroes in my book. But that does not mean they will always be our best advocates in every situation. Horses for courses.)

    Please be patient, folks. Things are finally moving in the right direction for us, but we must not unduly rush this. Let the scientific process, and the associated politics, unfold at its own pace for the moment. Smart politics is knowing where and how and when to apply the pressure. Right now we need to let the medical world clearly know we are watching them very closely, and they will not get away with anymore nonsense, but without us interfering with the actual science or internal scientific politics. It is a balancing act we must deal with.
  17. Megan

    Megan Senior Member

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    Where is Harvey Alter? Presumably his paper will be out by then?
  18. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    At the risk of getting shouted down, I understand why being a 'patient advocate' may be a negative. As a patient community we stand to gain a great deal with the success of Dr Mikovits' advocacy... as does she. It is a 2-way street. Patient support, good will and financial, will benefit WPI. The hint of financial gain taints everything WPI are involved in. Now, while I am in thrall to WPI's efforts thus far, I can see why the scientific community, at least those with no visible financial gain, would want to keep them at arm's length. Mind you, it reeks of double standands, particularly when you follow the money trail in the so called pure science arena.

    So any public attempt to compel WPI's involvement in the XMRV workshop will only reinforce the original perceptions of the pure scientists that WPI is biased. Science is not about public pressure... Yes, I know, I can almost taste the hypocrisy!
  19. V99

    V99 *****

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    The patent advocate accusation is not about money. Kline and Silverman would have the same problem if it were. I'm not sure how that effects your opinion.

    The request also has nothing to do with the WPI.
  20. muffin

    muffin Senior Member

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    Mikovits is not a patient advocate. She is a researcher who made the connection between XMRV and CFIDS, and other possible XMRV connections. This was a stupid and transparent ploy to keep her from speaking. If Mikovits is a patient advocate then what the heck are the others? What is Switzer? The anti- patient advocate?
    Too transparent a game - and yet they get away with this sort of thing. But not without a lot of public outrage they won't...

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