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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. judderwocky

    judderwocky Senior Member

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    IRRATIONAL. ONLY SCIENTISTS?????? GET OVER yourselves.

    I would like to reiterate to anybody still reading at this point. this is not the expressed wishes of the WPI. they DO NOT endorse this. This is NOT helping them. This is shooting us all in the foot and it is unwise.

    AT LEAST CALL THE WPI BEFORE YOU DO ANYTHING ON THEIR BEHALF. AT LEAST BE SENSIBLE.


    CONTINUING DOWN THIS ROAD IS CHILDISH AND IMMATURE.

    You are making her look even worse. WAKE UP.
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I still say it is none of our business. This conference for researchers. Before WPI published, there was secret conference about XMRV. No major injustices against US.

    If there is an injustice against WPI, then let them fight the battle and get support of other researchers, who will be attending. If patients were invited, I could see where we would have a place to say who we would like to hear from. But since we don't, then let them (other researchers) decide.

    Again, if I were one of them, I would walk out when Switzer spoke. But I still wouldn't insist Mikovits speak. As long as both sides of thought, or all sides of thought, are represented, then I would say it is ok.

    I mean, if I as a researcher want to talk to Mikivots about her research, I can call her or even catch her in the halls. She will attend, right? She is involved in the conference on a committee, right? And she will likely be publishing results soon enough also. It isn't like she is muzzled completely.

    Tina
     
  3. SOC

    SOC Moderator and Senior Member

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    Agreed, Tina. Very nicely expressed. I wish I had your skill with words.
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well, it is a hard pill to swallow, for patients who already have to swallow so many pills.

    Maybe this analogy will help: When I was editor of newspaper, I attended conferences for newspaper editors. Now, we ( including me at that time) considered our job to be serving the public. But the conference was a way for us to share experiences and ideas on how to do that more effectively, WITH EACH OTHER.

    The state newspaper association that sponsored the conferences would likely be very surprised if a bunch of Birmingham News readers started insisting that Birmingham News editor speak. They are the biggest newspaper in our state. But, that does not mean they automatically get to be speaker at every conference. Even if they won the Pulitzer. Maybe the head of the association has a beef with the editor of Birmingham News, who cares. As long as the conference is helpful to me, and I can share ideas with others over lunch and participate in open discussion parts and it is an informative and helpful program, then it is good. If I don't like the speakers and don't think the program will be helpful, I will save my money. If I want to discuss ideas with editors I respect, I can call them. And if I attend because it is a good program but I don't think one person giving a speech, that editor, is ethical or can add anything to my knowledge, I'll go stretch my legs and take in some fresh air during his presentation.

    The point being is that just because newspaper editors serve the public doesn't mean the public has the right to determine who speaks at their conferences.

    Tina
     
  5. SOC

    SOC Moderator and Senior Member

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    Thanks, Tina. That's a very good analogy and difficult for those of us who are (or were) scientists to say without sounding elitist in the present circumstances.
     
  6. Megan

    Megan Senior Member

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    Nice analogy Tina.

    From my perspective as a patient I don't care who is putting the WPI argument, so long as it is put forward, which I understand Ruscetti is doing. The program looks balanced to me, with people from all sides. The most glaring exception to this from my perspective is that Dr Alter is not listed, though if his paper is published before then it would be hard to imagine his findings won't be a significant part of the proceedings.

    I think we need to remember that Judy Mikovits is part of the Scientific Committe for this conference. I don't know how these things work at all, but maybe that's just as important, or more important, than who's doing the presentations? This committe will presumably be in a room together thrashing the wole thing out
     
  7. Mya Symons

    Mya Symons Mya Symons

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    Where do we send our letters to?

    V99, I went to the link but could not find the e-mail address or street address where we would send a letter to. This is probably my fault since I am not the best at the internet and/or computers. Could you let me know what link to go on to find where to send the letter or the e-mail address or street address?

    Thanks
     
  8. Sean

    Sean Senior Member

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    Even if his paper is not formally published in time, I would expect all the major players at the conference will know of it and its basic contents.
     
  9. V99

    V99 *****

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  10. V99

    V99 *****

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    Mikovits is the only scientist who straddles CFS & XMV fully. She is on the scientific committee, she will be at the conference, she is being stopped from presenting. They are trying to oust the WPI. We cannot ask Mikovits or the WPI is they agree with this, because that would involve them.

    Remember, you do hold an interest in this. The talk is on CFS, and the event is using tax dollars.
     
  11. Angela Kennedy

    Angela Kennedy *****

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    Fair enough V.

    Whatever the ins and outs of this event and the signficance (or not) of Mikovits not being invited to speak, this "don't bother the big boys cos they'll take their ball away that they never let you have in the first place" attitude towards people is itself irrational. Tax dollars? CFS? yes people have a stake in all of this.

    The constant invoking of scientific authority and mystique is itself irrational. All this speculation about Mikovits and her 'naughty girl' ways is irrational. The CDC paper being published while we wait for the Alter paper is, at the moment, seeming quite irrational. Kafkaesque.

    If we are afraid to question scientists in case we step on toes, destroy fragile,fragile egos, we are setting ourselves up to fail. We need to ask questions. Asking what this conference is about, expressing concern at the way Mikovits has been ad hominemed, is understandable. The RATIONAL response from the conference organisers would be to explain why Mikovits may not need to speak, and that the CFS-XMRV connection is going to be considered in full, and that they take on board, honestly, people's legitimate and rational concerns.

    IF they instead get all huffy - then we learn that rationality and clean science is not the order of the day. Something many of us suspect anyway : (

    If they do the RATIONAL response, then we have a rare gift: an actual plausible reason to feel reassured that we are not being - excuse the English vernacular - shafted. Again.

    We have precedence after precedence of being 'shafted' as a community in various ways. In that context - to think every little thing is going to be alright and not worry our pretty little heads and not dare engage with the mystical divine authority of science and its agents in case we step on their delicate little toes is itself irrational.
     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Megan, I agree that the omission of Dr Alter is a big disappointment, but perhaps a prudent act in the aftermath of the previous closed workshop where the leaking of his presentation caused such a furore. Best for him to wait till after his paper is published (if it is published) then he can have his day in the sun. After all, he may have been invited, but refused, having been sufficiently chastened by his earlier experience.
     
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    If I was a researcher there, in fact, I would not listen to Switzer's presentation only because his is on assay. If Vernon is correct, then I would see no benefit in hearing him talk about assays. Now, if he were giving a presentation on the history of retroviruses, ok, I might stay and listen.

    But the irony of putting him up as an expert on that topic would be too much, if Vernon is correct and the wrong tubes were used.

    Tina
     

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