Welcome to ME/CFS & Long COVID Virtual Advocacy Week 2021

Welcome to the 5th Annual ME/CFS Advocacy Week hosted by the Solve ME/CFS Initiative (Solve M.E.). To keep our communities safe during the pandemic, ME/CFS & Long COVID Advocacy Week welcomes all of our friends and partners from complex, chronic illness communities to participate FROM HOME in this week of virtual events and activities.

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In 2021, the Solve ME/CFS Initiative has expanded our annual advocacy events in order to bring together people with Long COVID and other complex chronic illnesses, their loved ones, advocates, scientists, clinicians and caregivers from across the country together to meet other advocates, strengthen our collective call to action, and share their unique stories with members of Congress.

Together, in one voice, we will fight for a stronger federal investment in research, education, and care for complex, chronic illnesses.

This year’s keystone event is Advocacy Day, on Tuesday, April 20. This VIRTUAL event connects you, and hundreds of other advocates like you, directly with your members of Congress using personalized online conversations. Just a few hours of your time can make a difference at the highest levels of government. We have accommodations for all levels of health, experience, and skill. Don’t miss this special opportunity!

REGISTER HERE for Advocacy Day April 20!

Advocacy Week Event Schedule:

A very special thanks to our sponsor Rare Diseases Legislative Advocates (https://rareadvocates.org/).

 

Advocacy Day Congressional Meetings:

Advocacy Day will be on Tuesday, April 20, 2021. Advocacy Day is a singular opportunity to speak directly to your member of Congress and their staff. Your story and your experiences are powerful and ensure that members of Congress understand the unique needs of people with ME/CFS.

You will be paired with other local advocates for 1-5 conference call or Zoom meetings with your Senators, Representatives, or members of their staff. We will provide you with all of the talking points you need.

For the best chance at securing a meeting, please register by Tuesday, March 23. The deadline to register for all participants is Tuesday, April 6.

Training

Advocates are strongly encouraged to attend the training session on April 13, but this is not a requirement to participate. Watch the 2020 training here.

You can talk to our team and ask questions during Zoom “office hours” on April 14 – 16.

 

EmPOWER M.E. Roundtable

The 3rd Annual EmPOWER M.E. Roundtable will take place on Thursday April 22. This event will be an interactive online education workshop on a specific chronic illness experience. Stay tuned for more! View previous workshops here:

2019 EmPOWER M.E. Roundtable: Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome

2020 EmPOWER M.E. Roundtable: How to Navigate Disability Insurance with ME/CFS

 

2021 Advocacy Week Talking Points

Coming soon!

 

Materials You Can Share:

Coming soon!

 

FAQ

Are events happening in person in Washington D.C?

No. Due to risks associated with the COVID-19 pandemic, Advocacy Week 2021 will take place completely online and through virtual meetings.

Do I need advocacy experience to participate in ME/CFS Advocacy Day?

No experience? No problem! We will ensure every team includes an experienced advocate able to assist and answer questions. One of the benefits in participating in ME/CFS Advocacy Day is the opportunity to learn from Solve M.E. staff and other experienced advocates. Don’t forget to save the date for Congressional Meeting Training on April 13:

What if my loved one lives in another congressional district or another State?

You can represent up to FOUR different congressional districts during your visit. This can include family members, loved ones unable to self-advocate, or other people with ME/CFS you are authorized to represent. On the registration form, there is a space to add the address to represent others. If you wish to represent more than one other person, please e-mail the additional names and addresses of the individuals you wish to represent to:  mestringer@advocacyassociates.com

How will I get information about my meeting? How will I know when my meeting is?

Our team will email your personalized meeting schedule no later than Friday April 16. It will include call-in number and information, exact time, group participants, and will identify the group leader. You will also have access to your meeting status at any time by using the full-service Advocacy Partners App. Remember which email address you used to register! That email will be your login for the App which will have:

    • Your Pre-loaded meeting schedules
    • Real-time schedule updates with push notifications
    • Talking points and attachments
    • Special notes and reminders for each meeting
    • Congressional profiles with biographies
    • Both in-meeting and post-Hill Day surveys/feedback questions
    • Your Member’s Vote history and Committee assignments
    • Recent news articles & links to each member’s social media profiles

Am I guaranteed to have a meeting?

Unfortunately, we are unable to guarantee meeting participation due to the potential size of some meetings. If we are unable to accommodate your meeting request, you will be notified by email no later than Friday April 16.

How will my participation in ME/CFS Advocacy Day make a difference?

Your story and your experiences are powerful and we need to make sure members of congress understand the unique needs of people with ME/CFS. ME/CFS DC Advocacy Day is a singular opportunity to speak directly to your member of congress and their staff.

Telling your story helps build a relationship and a connection. Your story makes the issue personal and relatable. Before you tell your story, often your member of congress simply thinks ME/CFS is a complicated acronym. After your meeting, ME/CFS is relatable and associated with a real person with real needs. Your meeting transforms our cause from an impersonal issue to a real emotional experience, for which more federal support is warranted.

And, your passion translates that experience into action!

I already know my Member of Congress. Should I just call them right now?

You should always call your member of congress – but not to schedule your ME/CFS Advocacy Day Congressional meeting.
Our partners at Advocacy Associates are providing all the logistical support to create your customized individual schedule which will be e-mailed directly to you. In order to avoid confusion, Advocacy Associates will handle all the scheduling details for you – so you are free to enjoy the experience of the day!
Please do not contact your member of congress about your April 20 meeting schedule, but feel free to contact them about other issues or requests.

Other questions?

Feel free to email our team at SolveCFS@SolveCFS.org or attend our zoom office hours on April 14 – 16.

 

Updates & News

February 18, 2021: Registration Opens for April 20 Advocacy Day! Click Here to Register