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First International XMRV conference

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

  1. George

    George waitin' fer rabbits

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    Man, I know I'm going to get chewed on for this but here goes,

    A- Dr. Mikovits is nobody she is not the first name on the Lombardi et al paper She is the last. She is a research director for a small start up lab. She has only 26 papers to her name.
    B- she has spoken out against people who consider themselves her superiors due to papers published, work in specific areas and all the other folderal that greases the egos.
    C- She did not discover this virus. She is not a major player in figuring out it's pathogenisis.
    D-Dr. Mikovits has two things going for her, she was in the right place at the right time and she knew the right people.

    You try to ram her down the throats of major players and you may cost her her career. Right now people (scientist) are jockeying for credit and glory in the next BIG discovery they will fight back if they see a threat to their place.

    I love that Judy has stood up and spoken for the patients. She has been a wonderful patient advocate and I want to see her able to continue that role.

    Now I do plan to write the major news out let's and emphasize how the CDC has just disqualified 30 years of science by targeting every test currently used to diagnose CFS in one web page update!
     
  2. SOC

    SOC Senior Member

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    The facts: Dr Mikovits was not invitedto present. Dr F.Ruscetti is "kindly stepping in". He is a respected researcher with excellent knowledge of the XMRV/ME/CFS connection. Dr Mikovits has been an advocate for ME/CFS, which in the scientific community can be seen as bias. It is typical under these circumstances to choose the best available speaker with the least appearance of bias. This increases the credibility of argument to the scientific audience.

    Not a fact: "They are trying to remove the WPI from XMRV research." The evidence does not support this argument. Dr M is still involved, she is just not an invited speaker at this workshop. There is NO evidence that "they" (whoever "they" are) are doing anything to "remove WPI from XMRV research".

    People who know something about the scientific research world have said repeatedly that not inviting Dr M to speak is not a denial of her scientific prowess or conclusions. This is not a popularity contest. This is about who is the best speaker for this particular audience.

    I have seen NO evidence that WPI feels that addressing the committee that selected the speakers is in any way beneficial to WPI or Dr M.

    If the reason that Dr M was not asked to speak is that she is seen as a patient advocate, bombarding the selection committee with letters from patients asking that she be allowed to speak will only reinforce that belief and reduce the likelihood that she will be asked to speak as an unbiased researcher in the future. Think about it.
     
  3. Frickly

    Frickly Senior Member

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    Please Act Now

     
  4. SOC

    SOC Senior Member

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    Agreed. You (or we) cannot discuss with people who won't listen. I, too, am done with this and hope that members will read the whole thread and draw their own conclusions.

    Call WPI's media center if you want to know if they think this campaign will help.
     
  5. SOC

    SOC Senior Member

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    Can someone get Frickly to stop posting this over and over and OVER? It is not forwarding the discussion.
     
  6. Frickly

    Frickly Senior Member

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    George!

    Good for you George! I plan on doing the same.

    "Now I do plan to write the major news out let's and emphasize how the CDC has just disqualified 30 years of science by targeting every test currently used to diagnose CFS in one web page update! "
     
  7. Frickly

    Frickly Senior Member

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    NO.........

     
  8. julius

    julius Watchoo lookin' at?

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    George,

    Before anyone bites your head off I will support you and say that I agree with you. Although I think Judy did have the original ah-ha moment regarding Rnase-l/PC/CFS/XMRV. So that is a very important contribution.

    And I understand that her careless comments were intended for our benefit, so I thank her for that. But it does put her in the position of being less respectable to other scientists. And does also put her pretty squarely in the role of advocate.

    As far as this campaign...whatever....go ahead, knock yourselves out.

    I guess there is a down-side to the internet after all. lol
     
  9. Kati

    Kati Patient in training

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    Sickofcfs, everyone is entitled to their opinions- and I agree with Frickly- we need to act now. Some people here have been waiting for 25 years and more, and it's lead them nowhere. We have to take the matter in our own hands in order to get good science, access to health care, respect and back to the real world.

    I will not give up.
     
  10. SOC

    SOC Senior Member

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    No bites from me, instead here's another pat on the head, George. I agree with you.

    Julius, you are so right. Dr M is my hero. As you say, she had the original ah-ha moment. I think her name will go down in history.
     
  11. SOC

    SOC Senior Member

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    I am not denying her right to her opinion. She is more than welcome to it -- and to post it. I am asking that she stop posting the very same post repeatedly -- including multiple times on one page.

    It doesn't seem an unreasonable request to me.
     
  12. judderwocky

    judderwocky Senior Member

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    The spiral into childish behaviors falls even further. Blasting the same post over and over again. Desperate attacks on allies. Its like children throwing a fit.

    You are turning yourselves into a caricature of a CFS patient... you sound like the very jokes they used to post on peoples walls in the CDC... are you even observing your own behaviour at this point?

    Do not confuse your "temper tantrum" with real activism. You should be focused on harder and more tedious campaigns over fundraising. With the growing budget crisis that is going to be the REAL BATTLE.

    Right now the federal government does almost nothing for funding... and Nevada is basically funding all the WPI research... how much longer can they do that in a budget crisis? what other groups are we competing with ??????

    You just want to whine and have a few minutes to inflict your anger on others.

    It sucks were sick. You don't have to shoot yourself in the foot because of it. or the rest of us. (i already limp)
     
  13. Frickly

    Frickly Senior Member

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    The original intent of this thread was to ask for those concerned about the agenda of the 1st International xmrv workshop to email their concerns to the NIH and virology Education. Most cannot keep up with 200 something posts so I will continue to remind people of the original intent if needed.
     
  14. SOC

    SOC Senior Member

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    I don't agree with your intent to repost the same (or essentially the same) post over and over, but I now fully understand that you have no intention of stopping. I leave it up to the rest of the members to decide if this is okay with them.

    I still advise members to read the entire thread and make up their own minds on the issue.
     
  15. George

    George waitin' fer rabbits

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    Correction

    I wanted to post a correction to something I said earlier. The Dr. Mikovits had only 1 paper to her name. That's not true. She has 26, 14 as a grad student under Dr. Ruscetti. She is the end name on the paper not Silverman so that means she was instrumental in that papers design. (first and last names are the designers)

    So I want to apologize for the error.

    In case anyone is interested Switzer has 35 published papers
    Kate Bishop only 16 - anyone know about her other qualifications???
     
  16. Sean

    Sean Senior Member

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    You can call it a 'request' all you want, but it is going to look to the organising committee (and others) like an unreasonable political demand from a non-scientist attempting to inappropriately influence the scientific process, especially if the WPI themselves do not want such requests made.

    +1
     
  17. V99

    V99 *****

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    Only if done inappropriately, vey true.

    If the Ruscetti's could not speak at the conference on that day, for whatever reason, then what? Who will be there who can? Only Mikovit's.

    Why would you force Franks Ruscetti to do the talk?

    Why would you want the WPI out of this research field?

    What elements are stopping Mikovit's presenting?

    What elements are stopping this message on this forum?

    What is your life worth?
     
  18. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  19. kurt

    kurt Senior Member

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    Last time I looked Mikovits had in fact only one single paper where she was listed as principle author. That would place her as a very junior researcher. However, she appears to have several decades of lab experience and she has worked a supporting role apparently in many studies so probably she is intermediate level. But definitely nothing like a senior researcher or heavyweight in her field.
     
  20. kurt

    kurt Senior Member

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    MODERATOR - This is an interesting thread but please stop throwing around subtle insults. There is no way to rationalize or justify that you 'just have' to insult someone because your points are so right and important. All views are welcome here as long as they are politely presented in a balanced way.

    If someone is offending you directly please report that post. Moderators do not track every discussion so your feedback is important. Nobody's views are immune from the rules.

    Thanks.
     

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