Solve M.E. Advocacy Week 2023

Advocacy Week 2023 will take place virtually and in person throughout the week of April 17th to April 22nd, 2023! 

Advocacy Week is a nationwide advocacy effort to connect people with ME/CFS, Long COVID, and associated conditions; scientists; clinicians and caregivers to share their unique stories with Congress. Our ultimate goal is to make ME/CFS, Long COVID, and associated conditions widely understood, diagnosable, and treatable.

There are actions for every energy level and ability to join, from social media posts to virtual meetings with Congressional leaders. This year we will be offering both virtual and in-person (Washington DC) events. 

Advocacy Week 2023 

Monday, April 17th, 2023 – Training Day – Washington DC & Virtual 

Tuesday, April 18th, 2023 – Senate Advocacy Day – Washington DC 

Wednesday, April 19th, 2023 – Social Media Action Day – Virtual 

Thursday, April 20th, 2023 – House Advocacy Day – Virtual 

Friday, April 21st, 2023 – EmPOWER ME Day – Virtual 

You may choose to participate on one or both days.  

No experience? No problem! We will make sure you have everything you need to conduct a successful meeting. You will receive training videos, talking points, and access to a personalized Congressional meeting virtual platform.  

Stay tuned for updates! 

As we get closer to April, we will be announcing more events and ways to get involved. Make sure you get every update by registering for Congressional meetings and signing up for the Solve M.E. email newsletter! If you have any questions, feel free to reach out to our Advocacy Week Coordinator, Raquel Valencia, at rvalencia@solvecfs.org.

Frequently Asked Questions

There are three main ways to participate in Advocacy Week:

  1. Congressional meetings: Virtual or in-person meetings with your Member of Congress or their staff. The best opportunity to directly connect directly with policy leaders. This activity requires reading/viewing preparation, computer use or travel, focus, speaking, and cognitive exertion. In-person meetings will take place in Washington DC on Tuesday, April 18th. Virtual meetings will take place by Zoom on Thursday, April 20th. (Energy Level: High) 

    Recommended activities: 
    • Register for meetings (15 mins) 
    • Attend a training or watch training video (1 hour) 
    • Prepare for meeting (15 mins) 
    • Participate in meetings with a small group (30 min per meeting) 

  2. Virtual Events: Held on the Zoom platform, these events provide training and opportunities to connect with other patients, advocates, and team members. This activity requiresreading/viewing and potential conversation (if desired). (Energy Level: Low)

    Recommended activities:
    • EmPOWER ME Roundtable (1 hour)
    • Solve M.E. Office hours (optional)
    • EmPOWER ME Breakout sessions (optional) 

  1. Digital and Social Media Actions: Using a computer, tablet, or phone, these actions provide low-energy pathways to raise your voice and support this year’s advocacy efforts. This activity requires reading/viewing and potential phone use (optional). (Energy Level: Low)

    Recommended activities: 
    • Email action to Members of Congress (3 mins) 
    • Post on social media (2 mins) 
    • Call your Member of Congress (5 mins) 

This year, we sought to ensure that everyone would have the opportunity to participate in Advocacy Week both in-person and virtually. We are working with partners to meet the needs and requests of Congressional offices and simultaneously provide a great patient expert with as many accommodations as possible. This way we ensure that we provide both virtual and in-person opportunities to make a difference! We have a couple of options if you’d like to participate virtually:
  1. Advocating to your House Representatives and their staff through virtual meetings — you can sign up here.
  2. We will also have a social media day on Wednesday, April 19th and will provide a toolkit of ways to advocate to your Senators and Representatives online. We’ll be providing more information about social media day as we get closer to Advocacy Week!

More information coming soon!

If you are looking to connect with other advocates to carpool, share a room, or just introduce yourself – join our Advocacy Week Facebook group here.

Senate Day is a full-day Capitol Hill experience bringing you face-to-face with YOUR Members of Congress and their staff to talk about ME/CFS, Long COVID, and associated conditions. The day will begin with a short welcome briefing, breakfast, and training at our very own “Basecamp.”  

A bus will be available to transport you to Capitol Hill from the hotel in the morning. Throughout the day on Capitol Hill, you will be able to take advantage of “Basecamp,” a private room, just for our Advocacy Week participants. This “basecamp” will be available throughout the day for advocates to rest, refresh, and regroup between meetings.   

You will be assigned to small groups with other advocates. If you are traveling with a friend or loved one, please make sure to indicate that on your registration form so we can group you together. With your team, you will meet in congressional offices to tell your story, educate them about ME/CFS, Long COVID, and associated conditions, and encourage them to take action!   

Your customized meeting schedule will provide ample time to get from meeting to meeting as your energy and ability allows. You can expect up to 5 meetings and we will customize your schedule to your ability and capacity.   

It is free to participate. Our team will provide you with training, materials, maps, guides, a personalized schedule, a light breakfast, and a “basecamp” room with refreshments (where you can rest throughout the day).  Transportation will be provided to and from the hotel. 

Individual attendees are responsible for their own travel, hotel, or parking expenses.   

There are many restaurant options on Capitol Hill for lunch – generally costing about $10-$15 per person. 

Absolutely! All congressional office buildings are handicapped accessible, and we can partner you with an able-bodied volunteer to help you navigate your meetings. Please indicate your needs on the registration form and we will make arrangements to accommodate. 

No experience? No problem! We will ensure every team includes an experienced advocate able to assist and answer questions. One of the benefits of participating in Advocacy Week is the opportunity to learn from Solve M.E. staff and other experienced advocates. 

Don’t forget to save the date to attend one of our trainings. We will have virtual Congressional Meeting Trainings on Thursday, April 6, 2023, and Tuesday, April 11, 2023. We will have an In-Person Congressional Meeting Training on April 17th, 2023 in Washington DC.

You can advocate on behalf of someone close to you. This can include family members, loved ones unable to self-advocate, or other people with ME/CFS, Long Covid, or associated conditions you are authorized to represent. 

For the Virtual House of Representatives Meetings: You can represent up to FOUR different congressional districts during your visit.  

For the In-Person Senate Meetings: You can represent up to TWO different states during your visit.  

On both the virtual registration form and in person registration form, there is space to add the address of those you would like to represent. 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:  nbecker@advocacyassociates.com   

Our team will email your personalized meeting schedule in early April. It will include a link to your personalized platform where you will find everything you need to join your Congressional meeting. Those attending in-person will also receive a T-shirt and a mobile app. Your personalized platform will include: 

  • Your meeting schedules 
  • Call-in numbers or Zoom links (virtual) 
  • Location, map and directions (in-person) 
  • Real-time schedule updates 
  • Meeting participants 
  • 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 
     

For in-person meetings: In order to ensure that those who sign up to attend in person are guaranteed a meeting, we are limiting in-person participation to 5 individuals from each state.

For virtual meetings: Unfortunately, we are unable to guarantee virtual 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 as soon as possible.

Your story and your experiences are powerful, and we need to make sure members of congress understand the unique needs of people impacted by ME/CFS, Long COVID, and other associated conditions. Telling your story helps build a relationship and a connection; you have the power to make this issue personal and relatable. 

After your meeting, these conditions and our requests are associated with a real person with real needs. Your passion translates that experience into action! Your meeting transforms our cause from an impersonal issue to a real emotional experience, for which more federal support is warranted.  

You should always call your member of Congress but not to schedule your 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 meeting schedule, but feel free to contact them about other issues or requests. 

Washington DC has many wonderful attractions, restaurants and museums to visit. Learn more and get a free visitors guide here.

In April, the weather can often be unpredictable – sometimes hot and muggy and sometimes raining. Check the 10-day forecast before you travel.

We will provide all the materials you will need for your meetings. We recommend only bringing your essentials and a notebook and pen if you’d like to take notes during your meetings. We recommend “business casual” attire with comfortable shoes.  

We will be providing Lobby Day T-shirts for all participants.

If you’d like to bring a computer, suitcase, or other items, you can store them at the “basecamp” which will be supervised – but space may be limited.   

*Important note* You will be passing through security checkpoints and metal detectors in order to enter congressional offices. Please note the “Prohibited Items in the U.S. House of Representatives, U.S. Senate and Library of Congress buildings” from the US Capitol Police. 

Watch this short video tutorialon downloading Zoom to join a meeting.  Test your system by joining a Zoom Test Meeting. 

Advocacy Training Videos

Check out these resources below from Solve M.E. Vice President of Advocacy & Engagement, Emily Taylor! 

Solve M.E. Remote Congressional Meeting Training

Advocacy Associates Virtual Schedule and Logistics Overview