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Live feed of 12/13 January CFSAC Meeting

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Jan 11, 2017.

  1. AndyPR

    AndyPR Senior Member

    I could see slides but had no sound and couldn't quickly find how to solve that so I think I'll wait for the recording too.
     
    Sasha likes this.
  2. Sasha

    Sasha Fine, thank you

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    If audio really is only via the phone that's a transatlantic phone call so I think I'll just wait!
     
    AndyPR likes this.
  3. Denise

    Denise Senior Member

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    Is it okay for me to collect people's comments about access in this thread and submit them to CFSAC?
    @AndyPR @Sasha @Neilk @Kati others @Rrrr
     
    slysaint, MEMum, actup and 8 others like this.
  4. Rrrr

    Rrrr Senior Member

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    very hard to listen to a conference call with my brain issues -- and hard to tolerate the CDC spokesperson say how much great work the CDC has done for "cfs" when you know that in reality they are being complete jerks and not changing their website or medical education to reflect the downfall of the psych theory (i.e. the downfall of the PACE study etc). given that exercise HURTS ME patients, it is atrocious that the CDC keeps telling the world that exercise is a good treatment for us.
     
    Webdog, justy, Jan and 12 others like this.
  5. AndyPR

    AndyPR Senior Member

    Fine with me, thank you Denise :)
     
    MEMum likes this.
  6. Nielk

    Nielk

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    CDC is preparing videos with the experiences of patients acted out by professional actors.
     
    actup likes this.
  7. Nielk

    Nielk

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    I can just imagine ho that's going to look. Beautiful looking, fit actors acting as ME patients!
     
    Zombie_Lurker, MEMum and actup like this.
  8. Nielk

    Nielk

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    FDA speaking now telling us everything they have (NOT) done for us.
     
    Zombie_Lurker likes this.
  9. Nielk

    Nielk

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    Wow - they attended a meeting on May 26, 2016 - follow up of P2P meeting on research needs and gaps.
     
    actup likes this.
  10. Nielk

    Nielk

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    Oh - more! They also attended the CDC Roundtable on Dec 26, 2016!!!
     
  11. Denise

    Denise Senior Member

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    I think she meant 26 SEPT 2016....
     
  12. Kati

    Kati Patient in training

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    The phone line quality is really poor. Some of the speaker I could not understand. It is extremely hard to concentrate- I will turn off the lime following NIH update.

    This is not an accessible meeting. And yes @Denise feel free to share my comments. And thank you.
     
    justy, MEMum, Hutan and 1 other person like this.
  13. JayS

    JayS Senior Member

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    I'm using Google's Voice app for the audio on my computer. I had almost given up & decided to try that. The process for installing the Cisco app just to see the slides was not easy & ultimately absurd. But Google Voice is working for the audio for the moment. The icon for it is next to the Hangouts icon on my Gmail page.
     
    AndyPR likes this.
  14. Sasha

    Sasha Fine, thank you

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    Fine by me! Bear in mind, though, that the CFSAC is a US govt group and they're not obliged to consider the problems of overseas patients in accessing their meetings live. It might be better to stick more closely to the concerns of US citizens who are having problems.
     
    AndyPR likes this.
  15. Nielk

    Nielk

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    Carol Head from SMCI - only 7% of CFSAC recommendations for the past three years have been implemented.
     
    Webdog, Jan, MEMum and 12 others like this.
  16. Kati

    Kati Patient in training

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    Carol Head killing it! Talking about the big elephants in the room- the public health crisis and how CFSAC has no traction at HHS- only 7% of the CFSAc recommendations are approved and acted upon.
     
    Last edited: Jan 12, 2017
    Webdog, Jan, MEMum and 14 others like this.
  17. Kati

    Kati Patient in training

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    Carol Head: "this is a public health crisis!" Bravo!
    "This is a dire public health problem"
     
    Webdog, Jan, Zombie_Lurker and 17 others like this.
  18. Sasha

    Sasha Fine, thank you

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    I think Carol Head is terrific. I'm looking forward to hearing what she said!
     
    Webdog, Jan, MEMum and 4 others like this.
  19. mango

    mango Senior Member

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  20. Nielk

    Nielk

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    All the advocate and patient testimonies were great! If anyone has written copies of them please post it on this thread.
     
    Jennifer J, MEMum, Hutan and 5 others like this.

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