1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
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Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.

  1. Sasha

    Sasha Fine, thank you

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    warriorseekspeace and Nielk like this.
  2. Sasha

    Sasha Fine, thank you

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    Some mike-tapping going on now - about to start, I hope.
     
  3. Nielk

    Nielk

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    Roll call.
     
  4. Sing

    Sing Senior Member

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    The image is staying small only. The full screen button won't work. Can others of you get a full screen image somehow?
     
  5. Sasha

    Sasha Fine, thank you

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    Not me... mine doesn't work either.
     
  6. Nielk

    Nielk

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    Mine just froze!
     
  7. Sing

    Sing Senior Member

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    The trouble for me is that I like to stay well back from the screen because the EMR bothers me, but if I do, I won't be able to see the faces. Rats!
     
  8. Nielk

    Nielk

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    I'm back. Sing - maybe just listen to it.
     
  9. Nielk

    Nielk

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    New member to the committee - Rebecca Collier; a case manager in disability. she has some experience dealing with ME/CFS.
     
  10. Nielk

    Nielk

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    3 new non voting members:

    CFIDS of America - Kim Mc leary
    IACFSME - Fred Friedberg
    NJCFS - Ken Friedman
     
  11. Nielk

    Nielk

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    Wanda Jones said that the way that the FDA conducted their meeting should be a role model for the future.
     
  12. Sasha

    Sasha Fine, thank you

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    My connection has dropped out half a dozen times - is this happening to anyone else? I know I have a bad internet connection. o_O
     
  13. Nielk

    Nielk

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    It happened to me once but I just open it again in a new tab and there it works. Sorry.
     
  14. Sasha

    Sasha Fine, thank you

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    Thanks - trying another browser, just in case...
     
  15. Nielk

    Nielk

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    They seem to be all excited about the fact that they will allow the public to be somewhat engaged and involved by asking questions at appropriate times.
     
  16. Nielk

    Nielk

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    Dr. Belay of the CDC mentioned a PCOCA call which is available on the CDC website here.
     
    snowathlete likes this.
  17. Firestormm

    Firestormm Guest

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    Hi, I am not able to watch/listen to this one today, but is anyone up to taking notes or even attempting a transcript? I know Mark is watching/making notes - he might be interested to hear from anyone who is also doing similar.

    I hope it is worthwhile. Thanks :)
     
  18. Nielk

    Nielk

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    were you able to hear me at all? (Gabby - on the phone)
     
    jspotila likes this.
  19. snowathlete

    snowathlete

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    I agree with Dr Klimas on a bunch of stuff but not deconditioning. I went from very fit and well to this state in days, it was not deconditioning. Of course, due to low activity I am now a bit de conditioned but I don't think challenging that without first treating the cause is a good idea - quite the opposite in my experience.

    The danger is that government love this kind of 'treatment' because it is so cheap! that in my view, threatens to take the focus of the right areas.
     
    justinreilly and shannah like this.
  20. Sing

    Sing Senior Member

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    Striking mix of speakers with a range of competence and incompetence in terms of knowledge and intentions. I feel that the hidden agenda of some is still to achieve nothing, to waste time, to confuse things. I steam with irritation... The others which include our advocates and patients are excellent--so clear. I hope this contrast will illuminate some minds, even the deliberately obtuse.
     

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