2017 ME/CFS Advocacy Week – Information and Updates

SMCI has partnered with #MEAction for ME/CFS Advocacy week in May 2017! This monumental advocacy effort will contain actions for every energy level and ability to join, from a social media post to a Washington DC face to face with Congressional leaders. The goal of our efforts are to educate, empower, and deliver our message to Congress to take action on ME/CFS now!

If you haven’t signed up yet, join the movement to fight ME/CFS at: http://bit.ly/2oN44rb

May 12th International ME/CFS Awareness Day Advocacy Action is live now! Take action here


Materials for Advocates and District Meetings:

  • Social Media Guide for Congress: DOWNLOAD HERE

  • 1 page summary sheet about ME/CFS: DOWNLOAD HERE 


  • Webinar Slides: How to conduct your local advocacy District Training: DOWNLOAD HERE

  • Webinar Slides: How to plan your local advocacy District Training DOWNLOAD HERE
  • State and District ME/CFS Data: DOWNLOAD HERE

  • Capitol Hill Briefing Flyer: DOWNLOAD HERE
  • Institute of Medicine Report Brief: DOWNLOAD HERE
  • April 6, 2017 ME/CFS Appropriations Sign-on Letter: DOWNLOAD HERE
  • ME/CFS By The Numbers Infographic: DOWNLOAD HERE
  • About the Solve ME/CFS Initiative Flyer: DOWNLOAD HERE
  • About #MEAction Flyer: DOWNLOAD HERE
  • Advocacy Meetings Talking Points: DOWNLOAD HERE

Key Dates:

  • How to conduct a successful congressional meeting: District Meetings Webinar Training Wednesday May 3  – click here to view the webinar recording: https://youtu.be/ba5zgklexP8
  • Capitol Hill ME/CFS Briefing: Thursday May 18
  • Washington DC Capitol Hill Storm: Wednesday May 17
  • Washington DC Call-in Day: Wednesday May 17
  • Social Media Storm and International ME/CFS Awareness Day: Friday May 12
  • Online Congressional Message Deadline: TBD
  • District Actions and Meetings: Monday May 8 – Thursday May 11
  • How to conduct a successful congressional meeting: District Meetings Webinar Training Wednesday May 3
  • How to plan your local advocacy: District Meetings Webinar Training April 19 – click here to view the webinar recording: https://youtu.be/awLjiyYhexQ
  • The first training for local district advocates was held on Wednesday April 19 at 10:00AM PT/1:00 PM ET and focused on setting up and preparing for your local meetings. This webinar featured our own Director of Advocacy and Public Relations, Emily Taylor and the Congressional Chair of #MEAction, Gail Cooper.

Information for Online Actions for International ME/CFS Awareness Day:

More information coming soon! Please check back or sign up here to receive updates by e-mail:  http://bit.ly/2oN44rb

Information for Local District Actions:

Watch our first training webinar to learn the best ways to request a meeting: https://youtu.be/awLjiyYhexQ

To download the slides from our first webinar training, click here: https://solvecfs.org/wp-content/uploads/2017/04/MECFS-Advocacy-Week-Training-District-Actions-1-final.pptx

Register to join our second webinar training on May 3, click here: https://attendee.gotowebinar.com/register/5649894757539265026

From April 19 – April 27 is the best time to schedule your district meetings with your member of congress and we need you to start your requests immediately. Below is your easy step-by-step guide to leading a local action as part of ME/CFS Advocacy Week. Local efforts will be taking place from May 8 to May 11.

Step 1: Request a meeting with your members of congress!

Watch today’s webinar to learn the best ways to request a meeting: https://youtu.be/awLjiyYhexQ

To download the slides for today’s webinar, click here: https://solvecfs.org/wp-content/uploads/2017/04/MECFS-Advocacy-Week-Training-District-Actions-1-final.pptx

Remember to contact your local district office NOW to be part of this effort. You can use this sample meeting request to get you started:

Don’t forget to use your local data. You can use this spreadsheet to determine the number of people with ME/CFS in your district and the economic cost to your community.

Step 2: Let us know about your progress!

After you send your meeting request, keep us posted by e-mailing congress@meaction.net. Let us know who you contacted, how you contacted them, and how they responded. We will connect you with other advocates in your district, provide you with valuable tools and information, and answer any questions you might have.

Step 3: Stay connected

Stay tuned to your e-mail for more information about ME/CFS Advocacy week and save the date for Wednesday May 3rd for the next training. Our next webinar training will cover everything you need to know about how to conduct your district meeting, talking points, and insider tips for a strong congressional meeting.

SMCI, with our partners at #MEAction will be traveling to DC with 55 advocates representing 21 states, territories and districts to storm Capitol Hill on May 17th. SMCI/#MEAction expect to schedule over 85 meetings throughout the day with congressional offices.  Additionally, there will be a briefing for congressional members and staff on Thursday to further educate them about this disease. Miss the chance to sign up? Don’t worry! You can still participate in a district meeting where YOU live, online social media campaigns, and call-in actions. Sign up here to get more information about how to join the effort here.

Information for Wednesday May 17th Call-in actions:

More information coming soon! Please check back or sign up here to receive updates by e-mail: http://bit.ly/2oN44rb

Information for Capitol Hill Storm and Advocates Traveling to Washington DC:

Tips for DC travelers:

  • The Metro is the Washington DC light rail and subway system. All the events for ME/CFS Advocacy week are metro accessible – for information about riding the Metro at: https://www.wmata.com/
  • Bring business cards for meetings if you have them
  • Wear comfortable shoes – we have plans in place to minimize walking, but there still will be some
  • Washington DC meetings are easy-going business attire.
  • Capitol Hill office buildings require security screenings to enter. Please be aware of metal items and allow extra travel time for security.
  • Most of the Capitol Hill office buildings have free wifi – be sure to login (most just require a terms of service acceptance) in order to save your data.

As you make your travel arrangements, I wanted to share the most up-to-date scheduling information I have. We have several other items that are still pending confirmation.

Online DC Advocacy Training
Date: Saturday May 13
Time: 12:00pm PT | 3:00pm ET
Location: Register at: https://attendee.gotowebinar.com/register/6312120715579994114
What is it: Webinar online training and Q&A for those attending meetings in DC

In-Person DC Advocacy Training
Date: Tuesday May 16
Time: 8:30am – 10:30am
Location: The McDermott Building
500 North Capitol Street NW
Washington DC, 20001
What is it: In-person introductions and training for those attending meetings in DC

Pre-Storm Welcome and Light Breakfast
Wednesday May 17
Time: 8:30am
Location: The ME/CFS Command and Control Center (aka rest area)
421 Cannon House Office Building
27 Independence Ave SE
Washington DC, 20003
What is it: An opportunity to meet with your teams, enjoy a light breakfast, and get oriented to the Capitol.

Capitol Hill Storm
Wednesday May 17
Time: Between 9:00am and 5:00pm
Location: Offices of your Senators and Representatives
What is it: 55 advocates will come together to storm capitol hill in Washington DC. Our team will take care of all your meeting scheduling, provide training, all your materials, reserved resting space throughout the day, and experienced advocates to assist you every step of the way.

Don’t forget that you can rest in-between meetings at the Command and Control center at:

The ME/CFS Command and Control Center (aka rest area)
421 Cannon House Office Building
27 Independence Ave SE
Washington DC, 20003

Please note that all events are optional and offered for the enjoyment and learning of the ME/CFS community.