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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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NIH State of Knowledge This Week - Patient Advocate's Comments

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Apr 4, 2011.

  1. shannah

    shannah Senior Member

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  2. muffin

    muffin Senior Member

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    In my very humble opinion, I believe that the government people are TERRIFIED by the shear number of patients that are trying to go to SOK. They know we are a basically hostile MOB of very sick, very angry people and who wants to present a paper saying we are not sick, there is no retrovirus, etc in front of an ugly (rightly so) mob?

    Says they are terrified and they should be. They did this to us and they damn well know they did this to us. Payback is hell, isn' it?
     
  3. LJS

    LJS Insert Witty Comment Here

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    Why do people always look at things in the worst possible light? I see it very simply, he registered too late for the conference and it was full. How can you look at this any other way? How can you make the assumption that somehow a conspiracy to keep CFS patients out? I used to attend similar science conferences when I was well and that stuff happened all the time, they fill up quick or they change the location of the event. It was not because they were trying to keep me from attending.
     
  4. shannah

    shannah Senior Member

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    How many ME/CFS conferences have been 'sold out' in the past? Other than CFSAC testimonies?
     
  5. shannah

    shannah Senior Member

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    And what's with no agenda published 3 days before the event??????
     
  6. shannah

    shannah Senior Member

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  7. ukxmrv

    ukxmrv Senior Member

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    I remember when Simon Wessely was talking in London once a similar thing happened. Booking were made and then patients who attended were put into an "overflow room" only.

    It may be that they want to restrict access to the speakers to stop anyone making a protest or trying to put banners etc in front of a camera.

    Then again they could just be incompetent and have badly managed the space.
     
  8. Cort

    Cort Phoenix Rising Founder

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    I feel for Chris...he makes every meeting and conference he can...I imagine that problem is that he simply registered too late but if anybody should be there he should be there.
     
  9. Cort

    Cort Phoenix Rising Founder

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    This is pretty par for the course I'm afraid....The agenda is a very - they're obviously not hiding anything - they're behind the ball, as they often seem to be.
     
  10. Boule de feu

    Boule de feu Senior Member

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    No, Currer. You are not being paranoid. It makes sense.
    I can give you another explanation.
    They were afraid that ME/CFS patients might infect others... because they KNOW we are very contagious.
    I can see it from here: A full room of XMRV+ people... hmmmm....
    Just kidding! LOL

    I know. I apologize for my very dark humor, this morning.
    I guess it's better than no humor at all, right?
     
  11. Sing

    Sing Senior Member

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  12. Boule de feu

    Boule de feu Senior Member

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  13. Boule de feu

    Boule de feu Senior Member

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    Maybe someone could contact one of the speakers and ask him or her to invite Chris as a special guest?
    Is it even realistic to think that this could be done and in such a short time?
     
  14. toddm1960

    toddm1960 Senior Member

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    LMAO....:Sign Good one: I thought it was a great come back, I sat here and laughed like crazy. :thumbsup:
     
  15. urbantravels

    urbantravels disjecta membra

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    There is a thread about the agenda here, because it's not just XMRV news:

    http://forums.phoenixrising.me/showthread.php?10887-State-of-Knowledge-Agenda-is-up!-It-s-UP!

    It's been repeatedly stated, and again in an email Dennis Mangan sent out today to everyone on his mailing list (quoted below), that the speakers are in a smaller room because of its capacity to video all the speakers for the webcast:

     
  16. ixchelkali

    ixchelkali Senior Member

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    Hillary Johnson spoke with Dennis Mangan, head of the NIH's transworking group on CFS, who told her that the reason the conference was being held in a smaller room was that the cameras had to specially situated to fit in all the speakers in the panel discussions at once.

    He also indicated that one reason the agenda was so late in being finalized was that a number of the people they asked first couldn't make it. That cracks me up: they had to use their "B list" speakers, consequently we get the best panel of speakers we've ever had at an NIH event. :D:D But I shouldn't be unkind; for whatever reason, it's a much better panel than we've had in the past, and we should give the NIH brownie points for that.



    You can, via cyberspace. Join me in watching it online. I'll bet there will be people discussing it in the chat room here on PR while it's happening, too. And maybe a thread for those of us who can't manage the pace of chat.
     
  17. Mark

    Mark Acting CEO

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    I had exactly the same thought, Chris is such an important figure for us, an exception should really be made for him. As Cort put it: if anybody should be there, he should be there. Is it feasible we can mount a rapid response email campaign to try to get him in?
     
  18. urbantravels

    urbantravels disjecta membra

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    I see in the blog he is expressing outrage that when he went online to register for the conference he was told it was "full," and he immediately assumed from this that there was something suspicious and secretive going on. He does not say WHEN he went online to register for the conference.

    He then further goes on to complain about being in the overflow room and having to watch the proceedings on a television, and that he should be granted admission to the main room because he's been to so many other conferences.

    I don't see any evidence that he is being treated unfairly, and I consider the omission of any information about *when* he tried to register to be significant.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That sounds a little fishy. How is having a smaller room required for this? That makes no sense to me. Couldn't they replicate the exact set up in a larger room?

    I have heard that in the past, the one time that there was going to be a big show of angry patients at a CFSAC was the only other time an ME meeting was moved to a smaller room. Could well be intentional; but hard to know for sure.
     
  20. insearchof

    insearchof Senior Member

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    I agree with you Justin. You don't move rooms you get the right equipment ie wider lens or you pan along the length of the panel and then just focus on the person speaking. larger room actually makes more sense for this....to be able to get the length of the table into the shot from further back and then use zoom capabilities .....not the other way round.

    "It may be that they want to restrict access to the speakers to stop anyone making a protest or trying to put banners etc in front of a camera."

    Most of us are interested in what they have to say and so, that strikes me as unlikely but easily remedied by the presence of security at the frount of the room.

    I do not know the patient advocate, but he seems to have a reasonable profile and to make a big deal out of his inability to attend, as a result of his own failing ( ie late registration ) seems unlikely to me.

    He makes very valid points with respect to patients being placed in an overflow room and having to rely on screens and a failure on the part of conference organizers to make reasonable accomodations. That sounds a bit like discrimination on the basis of a disability. Maybe someone should drop them a line to this effect.?

    I think it is fairly obvious as to what is taking place here......" State of Knowledge" on CFS is not a priority. If it had been, it would have been planned. This had none effectively, as evidenced by an inability to settle and promote the conference agenda only 4?days out from the event.
    In doing so, anyone could appreciate that attendance in such a situation was going to be fairly minimal....so maybe that is the real reason for the small room.

    And of course a small audience means less exposure to any important information delivered there.....which kind of makes me wonder....is there a speaker presenting on content that has something very important and or sensitive to say?

    Looking at the line up.....with talks on neurological issues etc, it is also possible that my last sentiment relates to a number of speakers.
     

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