EmPOWER M.E. Roundtable - Speakers announced

[Emily Taylor]

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

 

[Gemini]

@Emily Taylor would you kindly clarify the start time for tomorrow's (April 2nd) program? It's listed here as 9am but on the sign-up page as 9:30am.

Also I haven't received the link for the livestream yet. When will it be sent out?

 

[Emily Taylor]

HI Gemini -

THe link for the live-stream has been e-mailed to registrants. ANother e-mail will be going out this evening to everyone who registered.

Breakfast starts at 9am for those who are in-person - the presentation will begin about 9:15-9:20am online

 

[Hip]

As an aside: I find work of the Solve ME/CFS: Ramsay Award - Team 5 very interesting:

Team 5: Molecular Mechanism Behind Mitochondrial Dysfunction

Dr. Bhupesh Prusty, a molecular virologist in the Department of Microbiology at University of Würzburg, designed his 2016 Ramsay project to explore the hypothesis that mitochondrial dysfunction in ME/CFS has a pathogenic connection. He focused on HHV-6 (a herpesvirus that has been implicated in chronic conditions) based on his previous findings of HHV-6 activation and changes to mitochondria.

The preliminary results indicate that HHV-6 activation can lead to changes to mitochondrial structure and function, potentially even in healthy cells via a mechanism of remote activation.

Dr. Prusty said “data generated during the project will enable us to write at least 2 manuscripts, which will also create possibilities for us to acquire further grant funding to continue our work.”