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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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    That's cool. Sorry, my teeth are shiny sharp.

    The vaccine thing is definitely important. I have tended to think they are just discussing the development of one.
     
  2. V99

    V99 *****

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    Cort, you may not have intended to have said what you did, but you did say it. You gave the impression that she was supporting this. You need to be more careful. This is not taking your words out of context, it is because you were not clear. By pointing this out to you it nips it in the bud, so to speak. Making it clear that this is not the case.

    I should add, that we all do this at some point.
     
  3. shrewsbury

    shrewsbury member

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    Hi Cort - I'm happy to apologize again for misunderstanding your statement.

    I so strongly agree with your concern re Mr Switzer. That is why we included the following in our sample letter.

    I'm not sure if Ruscetti, when speaking on CFS, will be able to demostrate his XMRV detection expertise and explain how McLure's APOBEC points and Switzer's use of PCR are not relevant to finding XMRV.

    And, on reading your post, I wish I had mentioned the assay team from the Science study rather than delecting only mikovits and ruscetti. Good point.
     
  4. julius

    julius Watchoo lookin' at?

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    It is possible that Dr.M realized that it would be better (in the grand scheme) to have Dr. Ruscetti speak. He is a much bigger name and would be, at this juncture, a bigger draw.

    Think of it this way. If you were having a "moon landing workshop", you would draw a lot more attention by having Neil Armstrong speak than Gene Kranz (who the hell is Gene Kranz, right?) Although as a flight director Kranz probably could have a lot more to say.


    As far as not getting an invite,

    "Delegates who wish to apply for an invitation letter should contact the conference secretariat."
    http://www.virology-education.com/i...ation/vid/1FFA7DE5-A435-E0D1-6FAA93CE0CFE0124

    Maybe she didn't apply. Who knows?
     
  5. V99

    V99 *****

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    No, this is not the case. Ruscetti will not want to be presenting the talk when it is Mikovit's baby, so to speak. They have been left with no other option, because they will not allow her to speak. She will be there though.
     
  6. julius

    julius Watchoo lookin' at?

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    V99,

    I tried to read through the whole thread, but wasn't able to read every post (head spinnning:eek:)

    Did someone actually get confirmation that she applied and was "not allowed" as opposed to opting out.

    Sorry, I know I should just read every post, but....losing....consciousness......fading.......
     
  7. Kati

    Kati Patient in training

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    Here is the big picture:

    Lombardi and al. publish a huge paper in Science. (October 9th 2009)

    They give 20 positive samples to the CDC.

    The day of publication of the Science paper, Reeves says that they won't find it and it's published in a major paper (WSJ or NYT, can't remember)

    In January 2010, 2 british studies can't find XMRV.

    Dr Reeves gets removed from the CDC program as of February 14th 2010, and reassigned within the CDC. Dr Unger is the current acting chief.

    Then a dutch study comes out and can't find XMRV. WPI sent this team some positive samples and they still couldn't find it.

    All 3 of these teams did not "replicate" the study there was methodology issues, and cohort issues.

    Then the CDC announces they didn't find the virus. We hear from the FDA/NIH, as there is a leak from a Europe conference that they have succesfully replicated Dr Mikovit's work. The CDC manages to "stop the press" in order to not embarrass either agencies and see what went wrong.
    The FDA.NIH is doing more study to prove they are right. Their paper is delayed.

    In the meantime, the CDC publishes in Retrovirology without altering their paper. Dr Reeves is part of the Co-authors, the same guy that predicted back in October that they wouldn't find it.

    A first International Workshop for XMRV is organized in Bethesda, NIH quarters, for September. In July, the list of presenters is such that Dr Mikovits is not invited to speak at this workshop, and Mr Switzer who is the main investigator of the CDC study, will present on assay development, when clearly he didn't find the virus. Most of the talks will be around XMRV and prostate, and Dr Ruscetti will discuss CFS. The deadline for call for abstracts is July 30th and as of July 23rd, the FDA/NIH group has yet to put their paper in the press. A few other groups have yet to produce their papers, some of them expected to be positive.

    The CDC revamp their website http://www.cdc.gov/cfs/ and highlight their own studies including the Wichita cohort (telephone CFS screening), stating that there is no correlation between XMRV and CFS and that children facing adversity (their words) have more risks for CFS. The treatment list for cfs is as following:

    Professional Counseling
    Cognitive Behavioral Therapy (CBT)
    Graded Exercise Therapy (GET)
    Symptomatic Treatment
    Alternative Therapies
    Support Groups
    Pharmacologic Therapy
    Sleep Hygiene
    Pain Therapy
    Orthostatic Instability Treatment
    Antidepressants


    Clearly, the CDC is perpetuating their desire to keep CFS in the dark and marginalize the disease even more. They are a powerful authority and won't give up easily.

    For those of you that have been sick and disabled for decades, don't you think that what is going on this year is just the same old stuff?
    What are we going to do about it? In the 1980s and 1990's we didn't have access to internet like we do today. If we can't get out of the house, how about we start using our voices, together?
     
  8. V99

    V99 *****

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    Yes, she want to present, but she has been told she is not allowed to because she is a patient advocate.

    How they cannot all be patient advocates I don't know.
     
  9. julius

    julius Watchoo lookin' at?

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    Ohh, I see.

    Maybe they are concerned with the way she's made some of her 'advocacy' statements in the past. I think she's seen as a bit of a loose cannon by some (not my opinion, but the opinion has been expressed by some in the field).
     
  10. VillageLife

    VillageLife Senior Member

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    William Switzer giving a talk on how to use assays to find XMRV!!! Is insane.

    Dr Harvey Alter not being invited to talk about his assay is insane.

    Someone here mentioned the deadline for abstracts is July 30th, if Dr Harvey Alters paper is not out by next Friday, then he will just have to be added into the meeting at a later date. (otherwise its crazy!)
     
  11. V99

    V99 *****

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    It's an attempt to sideline the WPI and perhaps CFS.

    Think of it this way, if everyone who had collaborated on the 'Science' paper had come from Institutes like the WPI, who would be doing the talk then?
     
  12. julius

    julius Watchoo lookin' at?

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    Agreed...that's beyond ridiculous!!
     
  13. SOC

    SOC Senior Member

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    julius,
    I know it's a lot to read, but you're probably best off reading the whole thread -- well, threads, as there are multiple ones -- and making your own evaluation. Most of your questions will probably be answered, but the threads did not achieve any concensus that I could see, so there's no simple summary, unfortunately.
     
  14. V99

    V99 *****

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    Well you could say that Mikovits has been prevented from doing the CFS talk at the conference. That requires no consensus.
     
  15. VillageLife

    VillageLife Senior Member

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    I think your wrong, we're all very ill people trying to muddle through and sort something out, something which means a great deal to us. We are following our hearts. We simply can do nothing more then try our best, we all want the same thing, an end to this illness and I understand you might not see much point of this thread but I saw a great deal more.
     
  16. SOC

    SOC Senior Member

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    No, no! I didn't mean no point. Not at all, I said no consensus, which I believe is true. The thread is very far from pointless. I agree with with you that it was (and is) important to muddle through and sort things out.
     
  17. VillageLife

    VillageLife Senior Member

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    I'm sorry I didn't understand u.
     
  18. judderwocky

    judderwocky Senior Member

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    Phone WPI

    I did something very radical. I called the WPI.

    They have not released a statement but will do so soon. Dr. Mikovitz (and a few others ) are actually traveling right now and so a press release is planned to be released over our concerns.

    I cannot go into detail, but I would caution you that these letters are not helping their position.

    If you want to focus on something they are MUCH more concerned over.... the former governor of Nevada died.... yesterday. Apparently he was the one that funded a chunk of the WPI's new building.

    What they are really concerned about right now is losing all their funding.

    Pushing this issue to the committee in this way will not get the WPI our our patient groups the respect you desire. This will not be how they operate. They will not understand you.

    Look. I am an obnoxious a$$. I have been since I was little. So i'm just going to spell this out...the way my dad used to " if you're going to practice shooting yourself in the foot, at least use a BB gun. "

    Is anybody thrilled she is not speaking at the conference? I'm certainly not. Its just that fighting this paticular battle in this particular way is not going to help us....

    Focus on teh funding... that will really produce the results. The committee is not going to understand why somebody from the NIH, at the NIH sponsored conference, is not good enough for the keynote address.

    Furthermore... this isn't how these things are handled in these circles... we risk alienating ourselves and making ourselves complete outsiders.

    Just the thoughts of a pompous _$$.

    Loves you all, sorry if i pissed you off, or was rude

    IF we really wanted to focus on a new campaign... it should be a letter writing campaign / petition to the new govenor... asking him to resecure the funding of the previous administration..... this ... as i understand it.... could be more costly than a lot of the other issues people are focusing on.
     
  19. V99

    V99 *****

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    No one from the NIH is doing the keynote address.
    Who has died?
     
  20. V99

    V99 *****

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    Is this your interpretation? or a warning you have been given?
     

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