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

[Andy]

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

 

[Emily Taylor]

Thanks for sharing, Andy!

 

[Emily Taylor]

Bumping this quickly - Please register by End of day today!

 

[Emily Taylor]

Speakers announced!

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

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

 

[Alvin]

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

 

[Alvin]

I signed up again since i received no e-mail, still didn't get one

 

[ScottTriGuy]

I signed up again since i received no e-mail, still didn't get one

Ditto.

 

[Alvin]

Ditto.

I wonder if anyone is on the livestream

 

[Wonko]

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?

 

[Wonko]

It's now running.

https://solvecfs.org/empower-m-e-livestream/

The link doesn't seem to have any unique identifiers so presumably it's fine to post it.

 

[Wonko]

Oh dear, apparently
"Something went wrong during native playback"..........at least that's what it says on my screen

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.

 

[Alvin]

It's now running.

https://solvecfs.org/empower-m-e-livestream/

Is it good?

 

[Wonko]

Is it good?

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.

 

[Wonko]

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.