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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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    I really wish I was jumping to conclusions, or had no extra knowledge about this, but Mikovits will be there, and is being prevented from presenting. Ruscetti is kindly doing this instead. Ask yourself, why would Mikovits choose to not present at the conference? There is no reason to not present.
  2. SOC

    SOC Moderator and Senior Member

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    I understand that you are very concerned and that your conviction is very strong. The difficulty is that you have nothing solid to give us that there is a problem we need to handle. If Dr Mikovits and/or the WPI need us to act on this, they need to tell us something.
  3. V99

    V99 *****

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    Please, please, contact them and ask.
  4. SOC

    SOC Moderator and Senior Member

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    I can ask myself, but I can't draw a conclusion without facts. I can jump to one, but I'm not prepared to do that. There are reasons she might not present. Judderwocky has listed a number of them.

    If Dr Mikovits and WPI want us to make a fuss about this, they need to give us direct info. If they want to field questions all day, let them say so and we can all call and talk to them personally. Or they can post a statement.
  5. Kati

    Kati Patient in training

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    What V99 said
  6. V99

    V99 *****

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    I cannot help you then. Sometimes people cannot come out and say more because the repercussions will be much worse. It's not as simple as it seems.

    Seriously though, is it too much to ask them to have Mikovits present the CFS talk?

    Do we not want the WPI & Mikovits involved in this, and involved in the future, or are we feeling far too secure that everything is going well and we don't need them anymore?
  7. SOC

    SOC Moderator and Senior Member

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    I understand where you're coming from. You have info we don't have and it worries you. At this point it is getting much too much like a schoolyard spat for me. Rumors are still rumors.

    If Dr M and WPI are willing to be bothered by hundreds of people calling or emailing them about this, let them say so somewhere on their website or facebook page and then link us to it. All that's required is that they say they've heard there are a lot of rumors going around and in order to ease the minds of concerned patients, they will take the day to field brief questions.

    They're scientists, they have to know how it looks to the rest of us who are scientifically and/or analytically minded. They wouldn't (or shouldn't) act on rumor and neither should we.

    If this a schoolyard smackdown ego fight (which I sincerely hope it isn't), I'm staying out, no matter how much I like any of the parties involved.
  8. V99

    V99 *****

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    Don't change the subject.

    Ask them!!!!! then you will know it is not a rumour. Otherwise goodbye to the WPI, Mikovits, XMRV research, and everyone's life.

    If you cannot be bothered to contact them, then all the arguments you raise are pointless.
  9. SOC

    SOC Moderator and Senior Member

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    I wasn't trying to change the subject. Didn't even know I did. Still can't see it.

    It's not a question of "I can't be bothered", it's a question of whether I want (and want hundreds or thousands of others) to bother WPI. They do have serious work to do.

    I'm not buying "goodbye to the WPI, Mikovits, XMRV research, and everyone's life". If it's that critical, then repercussions be hanged, they need to be telling us something -- they'd be "dead" anyway.

    If WPI is that concerned, they can PM me. I'll delete this post so no one knows I suggested it. :cool: If I'm convinced we need to agitate, I'll add my voice to yours supporting a massive info campaign. I need facts, not rumors.

    Or better yet, they can talk to Cort, off the record. If Cort thinks it's worth writing an article about based on "anonymous sources" he firmly believes, you will find many more people here willing to take that leap of faith.
  10. V99

    V99 *****

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    I was referring to this
    Again your arguments are pointless if you cannot be bothered to contact them.
  11. SOC

    SOC Moderator and Senior Member

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    Sorry, then what's the subject?
  12. muffin

    muffin Senior Member

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    One single person must contact judy mikovits and ask what she wants

    There must be one person here who knows Mikovits or is able to contact her and ASK HER what she wants done by the advocates. Or, we ask the people at WPI what THEY want. But it has to be someone close and able to get a very firm answer so that we can all go forward and do as Mikovits/WPI want. And we do it in a united voice - no hysteria or drama, just firm demands - or for those that don't like the aggressive DEMAND word, REQUEST.

    Who is this person on this site? Cort? Has anyone asked WPI on FB???? Have they responded at all to any coments, questions?
  13. V99

    V99 *****

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    Just to reiterate, so no one has to read everything. Dr Mikovits, of the WPI, has not been invited to speak at the 1st International XMRV conference. Dr Frank Ruscetti is doing the presentation instead, even though Mikovits will be there. This is a political move, and nothing to do with Mikovits not wanting to or being unable to present. They are trying to oust the WPI, and perhaps even research into CFS. If you contact the WPI, they can tell you more.
  14. grant107

    grant107 Jean

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    Has anyone thought about the NIH not having Dr. Alter speak? He works for the NIH and he did the study on XMRV and yet he is not invited to speak. That seems very strange.
  15. SOC

    SOC Moderator and Senior Member

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    His work isn't published yet, so he would not (typically) be considered an expert on XMRV -- at least not to the extent to be considered as an invited speaker at this particular workshop.

    That said, I still question Mr Switzer's invitation to speak. I'd love to hear the expanation for that.
  16. shrewsbury

    shrewsbury member

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  17. SOC

    SOC Moderator and Senior Member

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    :victory: Hurrah! Finally! He don't look so hot on that list now, does he? [snide snicker unworthy of my better character]
  18. George

    George waitin' fer rabbits

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    This is wonderful and just proves what a little advocacy can do. What Muffin said about contacting Dr. Mikovit's to confirm or deny that she "wants" to speak at the conference is crucial. If we start advocacy and it has a backlash on to Dr. Mikovit's that would be really, really, bad! There is some um. . .I would say snideness in many of the statements that have been made about WPI over the last 9 months. Nothing overt but subtle diggs from a variety of sources. It's tough being the big dog in a fight, everybody hates you. (grins) It will settle out eventually and I think Judy's name will live in history. The question is whether it's good to stick her out front right this minute and make her fight for her propers or lay back and wait for them to step in the dog sh. . . . um poo and then get 'em!

    So who's up for e-ing the Divine Dr. M. (big grins)

    Yoohoo, Shrew, (grins) I sent you pictures. (evil grins)
  19. Cort

    Cort Phoenix Rising Founder

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    My guess is that the Workshop was created by committees with all the different parties represented - thanks Shane for pointing the committees out - and that what we got was a mixture of representatives.

    Someone wanted Switzer in and he got in.....some people didn't want Dr. Mikovits and so she was excluded. I'm sure there's also the desire to get the most prominent researchers to speak. Despite the prominence Dr. Mikovits has achieved with this last paper she doesn't have the track record of a Dr. Silverman or Dr. Ruscetti. I'm sure that they wanted to get 'names' in there.

    Over all I think its a very strong panel. Although Dr. Mikovits isn't there the committee makeup was very good. I think it certainly could be construed as a snub to Dr. Mikovits and the WPI, and may be difficult for her and them personally, but it won't hurt the march towards understanding XMRV. This is obviously not a Workshop to Disprove XMRV.

    My bigger concern is why Dr. Alter is not involved......does this mean anything about his research? His followup studies are supposedly done (????).
  20. Cort

    Cort Phoenix Rising Founder

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    Have you talked with the WPI about this? I agree that the WPI is the loser, here - there's no doubt about that. Neither Dr. Mikovits or Dr. Lombardi are speaking. On the other hand its hard to feel that XMRV is losing....there are lots of good people speaking and the committee makeup was very good.

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