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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Registration Now Open for Public Session (Jan. 27th 2014) of ME/CFS IOM Meeting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Wally, Jan 10, 2014.

  1. Wally

    Wally Senior Member

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  2. Wally

    Wally Senior Member

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    Update - I have signed up to attend in person and I have requested a slot for public testimony. [​IMG]

    Earlier today I sent out a letter, which included a formal complaint on how this process has been handled. I also included a written request to be allowed to attend the public session of this meeting, notwithstanding my objection to the underlying HHS/IOM ME/CFS contract. (cc's of my letter are flying all over D.C. right now) [​IMG]

    Just received my confirmation that I have been granted admittance to the public session of this meeting. However, no confirmation was included on whether or not I will be granted time to give public testimony. [​IMG]

    Video:

    Wally
     
  3. Bob

    Bob

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  4. Firestormm

    Firestormm Guest

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    First come first served Wally. Be there early I would suggest. Only 15 3 minute slots are being allowed. Good luck x

     
    Last edited: Jan 10, 2014
  5. jspotila

    jspotila Senior Member

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    I was under the impression that the slots will go first-come first-served in registration online, not attendance at the meeting . . . . am I wrong?
     
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  6. Firestormm

    Firestormm Guest

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    @jspotila Jennie see the narrative from the email I was sent above. I have highlighted it in bold x
     
  7. Wally

    Wally Senior Member

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    I typed as fast as my fingers would allow me, so time will only tell if I was fast enough to snag one of the 15 other slots. I am curious as to how the IOM decided to give out the other golden tickets to those individuals listed on their tenative agenda?

    I will reiterate again over on the thread started yesterday by Phoenix Rising's Acting CEO, (Mark Berry @Mark) that I do believe anyone speaking as an advocate for a group of individuals should be prepared to identify exactly who they are speaking/advocating on behalf of.

    See, http://forums.phoenixrising.me/inde...ll-the-iom-committee.27457/page-3#post-419043 - post no. 27 (as well as post nos. 12, 14, 15 and 25)

    As of right now, no one identified on the "tenative" agenda for this meeting has been given a proxy to speak on my behalf. :cautious:

    Wally
     
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  8. Wally

    Wally Senior Member

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    Jenny,

    Your impression is the same as mine. Perhaps lawyers tend to see things on a more literal basis. ;)

    @Firestormm, I believe you are incorrect in stating that I should arrive early at the meeting in order try to obtain a slot to give public testimony. :confused:

    Wally
     
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  9. Firestormm

    Firestormm Guest

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    Why? You can read the email as well as me. I have highlighted the relevant bits in bold. You register to speak at the door when you arrive. If there is a slot still available then you get to speak for 3 minutes. Those on the agenda have already been granted slots for 5-7 minutes talk time. Seems straightforward - but I am not a lawyer thank the gods ;)
     
  10. Bob

    Bob

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    My interpretation is that it's first-come-first-served in terms of how quickly you register online.

    @Firestormm, it doesn't say anything about having to register when you arrive at the door. Could you have misinterpreted it?

    I've added a word in bold, below, which might illustrate why we're interpreting it differently:
     
    Nielk likes this.
  11. Denise

    Denise Senior Member

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    The registration form asks people to indicate if they are interested in a public comment slot.

    Also - the IOM project page has some FAQs on it http://www.iom.edu/Activities/Disea...elitisChronicFatigueSyndrome/2014-JAN-27.aspx
     
  12. Ember

    Ember Senior Member

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    justinreilly and WillowJ like this.
  13. jspotila

    jspotila Senior Member

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    I parse it differently:



    You sign up when you register to attend the meeting in-person. In-person attendance is required in order to speak, so you sign up for a slot when you are registering to attend in person. The second sentence (allocating on first come first served) modifies the first sentence.
     
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  14. Firestormm

    Firestormm Guest

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    Lawyers :) :) :)
     
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  15. Wally

    Wally Senior Member

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    Love us or hate us. You will probably need us whether you like it or not. :D
     
    Last edited: Jan 10, 2014
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  16. lnester7

    lnester7 Seven

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    To all,


    Just remember this is part of our history. I know we all oppose but if you take all the time you have to only oppose, then we might not saying other things that if the contract goes ahead will not be said. This is the opportunity to let them know the symptoms, the test results, the evidence so they cannot bury us! Fight with facts!

    Just a thought.
     
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  17. jspotila

    jspotila Senior Member

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    You can take the lawyer out of the courtroom, but you can't take the courtroom out of the lawyer. Something something injunction mumble mumble. :angel:
     
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  18. WillowJ

    WillowJ INFJ

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    I understood the same way as Jennie and Wally, and I'm not a lawyer.
     
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  19. lnester7

    lnester7 Seven

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    I also want to say: I am focusing saying everywhere that I have inability to produce energy on demand instead of "fatigue" (which I have also) because I think we need to distinguish the ME from the general fatigue bunch. We have a very unique situation and we need to highlight it.
     
  20. Bob

    Bob

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    Does anyone know if we need to register just to watch the webcast?
     

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