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First International XMRV conference

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

  1. V99

    V99 *****

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    They are trying nudge the WPI out of this, that will not be good for CFS XMRV research full stop. Alter not being there is also a good indicator of their plans. It is most likely driven by prestige, money, and perhaps an attempt to remove CFS from the subject.
  2. V99

    V99 *****

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    Contact the WPI and ask them.
  3. Cort

    Cort Phoenix Rising Founder

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    I agree that its tough for Dr. Mikovits; she wrote the big paper that started all this - it never would have happened without her - and she is the logical choice to give a lecture - really she should be giving the keynote lecture.

    I imagine she is being cut out because she's been outspoken at times on behalf of CFS in the way that most researchers aren't which is a shame because its her science that matters and its ultimately the science that makes the difference; that is what they are supposed to be discussing.
  4. VillageLife

    VillageLife Senior Member

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    ive heard rumours that doctor mikovits was told she cant attend because shes seen as a patient advocate!

    I feel we need dr Mikovits at that meeting, because I feel she is very key for the future......
  5. V99

    V99 *****

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    The stupid thing is that they are all patient advocates, because they are studying patients with disease. Or they should be.
  6. Frickly

    Frickly Senior Member

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    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.
  7. shrewsbury

    shrewsbury member

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    Hi all,

    Cort - I'm not sure where you got "the idea that Dr. Mikovits was galvanizing patients to speak on her behalf". I haven't seen this stated or implied anywhere.

    Dr Mikovits and WPI have absolutely nothing to do with this patient-driven response to her being excluded from the guest speaker list of the 1st International Workshop on XMRV.

    I'm one of the people with XMRV Global Action. We were concerned about Judy Mikovits not being one of the speakers, my favourite analogy being that it is like having the 1st polio conference and not inviting Salk to speak.

    Before taking any action, we contacted Dr Mikovits to ask if she had been invited to speak at the conference. She told us that she had not been invited. End of story. To reiterate - Dr Mikovits and WPI have had absolutely nothing to do with XMRV Global Action's info package and sample letter.
  8. George

    George waitin' fer rabbits

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    Hey shrews, I think Cort was responding to what I wrote which was that if a lot of patients protest that Dr. Mikovit's should be allowed to speak that it could be bad for her standing the medical community. That was Cort responding to me.

    Hey if you guys think you should have a big campaign to let people know how ya feel I think that's totally cool. Just make sure it's OK with Dr. M is all I'm saying. It would suck to embarrass or otherwise make Dr. M feel bad because of a good intention.
  9. SOC

    SOC Moderator and Senior Member

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    Thanks for that, shrewsbury, that's the clearest statement of facts I've seen so far. It's a big help. :Retro smile:
  10. V99

    V99 *****

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    By not allowing Mikovits to speak, it shows they already have no respect for her and the CFS discovery. This will not harm her any further. Most importantly because she is not involved in this.
  11. shrewsbury

    shrewsbury member

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    hey George and Cort - sorry if I misunderstood.

    It would be horrible to do anything to harm Dr Mikovits' standing in the medical community. I had been monitoring the speaker list for 2 months. We discussed this and thought about it for some time before taking action. We don't see it as harming Dr Mikovits; the opposite of that is the intention. She's the lead author of the paper, published in Science, one of the most prestigous journals, that found XMRV in the blood. Excluding her from the list of invited guest speakers seems to be damaging to her standing in the medical community to us.

    ps - like the new signature!
  12. SOC

    SOC Moderator and Senior Member

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    Speaking from experience in scientific research (admittedly not at the calibre of Dr M), it could very well harm her.

    People organizing conferences and workshops are not used to being pushed around by laymen who don't understand the workings of scientific research and are not going to like feeling like they will be persistently harrassed about their professional decisions.

    Dr M could easily suffer if it's perceived that she isn't playing by the rules. Several people have said here that they talked to Dr M and that is the reason they are advising a campaign to change the speaker line-up. While Dr M may not have directly encouraged such a campaign, it could easily be perceived that she was involved at some level.

    There is also the issue of questioning the scientific credibility and ethics of the individuals involved in the selection. It's one thing to say you don't understand why they selected the speakers they did, it's another to imply there was some inethical behavior involved.

    I strongly advise saving your political action for politicians,

    My personal opinion is that it would be best for our cause and Dr M if these threads were completely deleted from this public forum. I understand this is just my opinion and I stand by the decision of the larger group.
  13. V99

    V99 *****

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    Why do you believe anyone is attempting to push them around? It is a request.

    Again this is nothing to do with Mikovits.

    So Mr Switzer is not playing a political game? and neither is the HHS when they put a hold on the papers?
  14. George

    George waitin' fer rabbits

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    Hey V I got a couple of questions.
    1. What are you advocating for? Dr. M to speak at the conference or for Dr. M to Be at the confrence?
    2. Has Dr. M said she is o.k. with advocacy in her name?
    3. Who are you targeting for the advocacy, like specific members of the committee that chose the speakers????

    Just askin please don't bite me. (grins)
  15. Cort

    Cort Phoenix Rising Founder

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    I certainly didn't say that. Please reread my statement - actually I deleted it out of concern that it could be construed that way :). But anyway, that was absolutely not the thrust of my statement.

    I think its unfortunate that she was not invited to give a talk but what I'm more concerned about, after thinking about it, is William Switzer giving a talk on how to use assays find XMRV....That is the big issue now...that is the issue CFS needs to overcome...Why give it to him and not to the WPI assayist? She was actually able to find it.
  16. V99

    V99 *****

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    Speak at the conference on CFS. She is already going to be there.
    No one has asked her if the advocacy is ok, as she should have no involvement in this.
    The committee is being asked to allow her to do the CFS talk.

    Bite
  17. SOC

    SOC Moderator and Senior Member

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    Again, I'm not saying you shouldn't do what you think is right. I'm just trying to give another perspective on the situation. If you're comfortable moving with the facts you have on hand, then go ahead and move.

    DHHS is political. CDC is political. I don't know what Mr Switzer's game is.

    You can say this has nothing to do with Dr M, but the question is what does it look like to her professional colleagues who are not accustomed to layperson involvement in their professional dealings?
  18. V99

    V99 *****

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    Firstly, not everyone is a layperson.

    Secondly, any reasonable person will understand and accept exactly why Mikovits should be doing the presentation. It should not matter where this comes from, and again this is coming from many different sources.
  19. George

    George waitin' fer rabbits

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    Dang! Good thing that was just my butt. (grin) You got some teeth! (doggie compliment)
    Well, ya'll are going to do what you think is right and I say good for you. I'm out cause I think there's stuff that's in play that makes me take a wait and see approach. I'm particulary interested in "Vaccine Development, Dr. Ellen Sparger". Why is a vaccine specialist going to an XMRV conference????????????

    I'm thinking that 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. They would have a greater understanding of the disease pathogenisis than Dr. M would. (at least for now, grins)

    But that's just my take.
  20. Cort

    Cort Phoenix Rising Founder

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    You are taking my statement out of context. If you go back to the original message you'll see that I was responding to the message below. I would also add that by continuing this going you are keeping the question whether Dr. Mikovits is somehow involved in all this up in the air on the Forums - giving it more room to be misconstrued further. If you have more questions about my statement please PM me.

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