USA: Setting up meetings with Congress during ME/CFS Advocacy Week

[ahimsa]

Note: I am not one of the organizers and I don't have any official role (if anyone official is reading this, please make corrections if necessary!). I just wanted to pass on the information since I think it is important to get started as early as possible if you want to set up a meeting.

There are a few different actions planned during ME/CFS Advocacy Week, May 8-11, 2017. I don't remember all the details (and can't seem to find a summary online). But one part of the advocacy is to have some activists travel to Washington, DC to meet with legislators while others meet with Congress members in their home districts.

Yesterday there was a webinar about how to set up a meeting with your local representative. The webinar was hosted by #MEAction Congressional Chair, Gail Cooper, and Solve ME/CFS Initiative Director of Advocacy and Public Relations, Emily Taylor.

The session was recorded and has been posted

The next webinar will be May 3 and will cover how to conduct these meetings.

I did attend yesterday's meeting and I hope to set up a meeting with my own Congress rep. I did meet a staff member last year, and was able to tell my story and pass on information about ME/CFS, but I have never had an in-person meeting with my Congress rep.

 

[Emily Taylor]

Thank you for sharing, Ahimsa! We have many actions and you are right that we have failed to publish a summary. I will work on creating a webpage to house all the information about this effort right away.

From May 8 - May 11, we are planning district meetings with members of congress (see webinar above!)
On May 12, international awareness day, there will be a social media storm
On May 17, 55 advocates are storming capitol hill to make our message heard and we will have an accompanying "call-in" effort for folks unable to travel.
On May 18, we are hosting a capitol hill briefing to inform members of congress and their staff about this devastating disease.

I hope this helps clarify! I'll post the link to the website here as soon as I finish making it!

Thanks again for helping us spread the world about ME/CFS advocacy week! For anyone interested in joining this effort, you can sign up at:
https://docs.google.com/forms/d/1pFdTzHMvhnarni_ic1bKSB88U9UxxmlU1YzTdmwhSII/edit?ts=58dafa31

 

[ahimsa]

Hi @Emily Taylor

Thanks so much for the additional information!

And great webinar yesterday! I was there for most of it but I missed the first 10 minutes or so. I was happy to find the recording today so I could see what I had missed.

 

[Emily Taylor]

Hi again!

The website is: http://solvecfs.org/2017-mecfs-advocacy-week-information-and-updates/

The link to the webinar recording is also there. If you have any other questions, please feel free to e-mail me at etaylor@solvecfs.org

Many thanks!

 

[ahimsa]

Bumping this thread for those who missed it.

Next training webinar is May 3rd

https://register.gotowebinar.com/register/5649894757539265026

Sadly, I won't be able to meet with my own representative during the ME/CFS Advocacy Week in May. I'm dealing with some family health issues and just don't have the extra energy for anything else.

But I'm cheering on anyone else who plans to participate!