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Solve ME/CFS Initiative: Register now for the EmPOWER M.E. Roundtable Livestream!

Discussion in 'Advocacy Action Alerts' started by Andy, Feb 27, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    Solve ME/CFS Initiative (SMCI) is hosting our first ever EmPOWER M.E. Roundtable on April 2, 2019 moderated by Board Certified Patient Advocate, Sharon Stevenson, DVM PhD. As part of Advocacy Week in Washington DC, this event is free for all who attend and will also be livestreaming online for those who can’t join us in person.

    Join us in person:
    Tuesday April 2
    9:00am - 12:30pm
    Marriott Bethesda Hotel
    5151 Pooks Hill Rd.
    Bethesda, MD 20814
    Breakfast provided

    The EmPOWER M.E. Roundtable will feature two workshop-style panels:

    Session 1: “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome”
    Exercises and ideas for empowering your experience in the medical environment

    Session 2 – “Advocacy: Your Story, Your Impact”
    How telling your story can empower you and make change by combining advocacy and self-representation

    Join us online - register here to watch live:

    http://go.solvecfs.org/e/192652/for...h=Qqsms-VJ5udyP6U1rOGohDrCRg0f4j_uaLHJb-vRlVY
     
    ScottTriGuy, ahimsa, Comet and 3 others like this.
  2. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Thanks for sharing, Andy!
     
    MEMarge and Andy like this.
  3. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Bumping this quickly - Please register by End of day today!
     
    Andy likes this.
  4. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Speakers announced!

    Tuesday, April 2nd 9:00am ET - EmPOWER M.E. Roundtable


    [​IMG]Solve ME/CFS Initiative (SMCI) is hosting our first ever EmPOWER M.E. Roundtable on April 2, 2019 moderated by Board Certified Patient Advocate, Sharon Stevenson, DVM PhD. As part of Advocacy Week in Washington DC, this event is free for all who attend and will also be livestreaming online for those who can’t join us in person.

    Join us in person:
    Tuesday April 2
    9:00am - 12:30pm

    Congressional Ballroom
    Marriott Bethesda Hotel
    5151 Pooks Hill Rd.
    Bethesda, MD 20814
    Breakfast provided


    Join us online - register here to watch live:

    http://go.solvecfs.org/e/192652/for...h=bfCcHcL96iNngdMhdeVcaf4zd-hPT95trN7MyZkQBJY


    The EmPOWER M.E. Roundtable will feature two workshop-style panels:

    Session 1: “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome”
    Exercises and ideas for empowering your experience in the medical environment


    Dr. Nancy Klimas: ME/CFS clinician and researcher, Director of the Institute for Neuro Immune Medicine, Nova Southeastern University, Nova Southeastern University
    Dr. Camille Birch: Ramsay Award Research Awardee and person with ME, Genome Analyst, HudsonAlpha Institute for Biotechnology
    Eric Braun, PhD: caregiver, partner, and ME Advocate


    Session 2 – “Advocacy: Your Story, Your Impact”
    How telling your story can empower you and make change by combining advocacy and self-representation


    Secretary Rona Kramer: Secretary Maryland Department of Aging, Former State Senator, family member of person with ME
    Emily Taylor M.A.: Director of Advocacy, Solve ME/CFS Initiative, and caregiver

    Join us online - register here to watch live:

    http://go.solvecfs.org/e/192652/for...h=bfCcHcL96iNngdMhdeVcaf4zd-hPT95trN7MyZkQBJY
     
    Wonko, MEMarge, Andy and 1 other person like this.
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Is there a way to check if i have already registered, i can't remember if i did already or not?
     
  6. Alvin

    Alvin Senior Member (Voting Rights)

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    I signed up again since i received no e-mail, still didn't get one
     
    ScottTriGuy likes this.
  7. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Ditto.
     
    Alvin likes this.
  8. Alvin

    Alvin Senior Member (Voting Rights)

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    I wonder if anyone is on the livestream
     
  9. Wonko

    Wonko Senior Member (Voting Rights)

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    I got an email at 3.51pm saying the livestream was running. I didn't notice it at the time and didn't see it until 4.02pm.

    Went there.

    Text on video page saying it will resume shortly, then a few minutes alter a voice saying it will continue at 11.15 EST.

    No idea what's going on but so far it's not very interesting.

    I've resisted the temptation to google what time 11.15 EST is in the UK but I'd lay money I've missed the first session, they are now having a coffee break, and things will resume either 2 minutes ago (they haven't) or in 58 minutes.

    I'd forgotten about it and was about to seriously consider doing something when I noticed the email.

    Looks like that's not happening now.

    ETA - I did get a confirmation email, apparently ay 6.02am this morning, so not within several hours of my signing up.

    Check spam folders?
     
    Last edited: Apr 2, 2019
  10. Wonko

    Wonko Senior Member (Voting Rights)

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    Trish likes this.
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    All I can say is clicking on that link, in my above post, works for me.

    Chrome, Windows 7, no idea what else is in here, probably all the usual suspects.
     
    Sly Saint and Trish like this.
  12. Alvin

    Alvin Senior Member (Voting Rights)

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  13. Wonko

    Wonko Senior Member (Voting Rights)

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    Not so far.

    Not for me anyway.

    Currently talking about how to speak to a representative as an advocate, deliberately badly so as to illustrate how not to do it.
     
    Alvin likes this.
  14. Wonko

    Wonko Senior Member (Voting Rights)

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    I'm giving up on it now, it's not that interesting to me and my 70MBp/s cable internet isn't currently good enough to allow me to stream it without it stalling every few minutes. It's getting on my nerves a teeny tiny bit.
     
    Alvin likes this.

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