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.). Advocacy Week will take place from Sunday, April 18, 2021 to Saturday, April 24, 2021. This year, “ME/CFS & Long COVID Advocacy Day” welcomes our new partners from the Long COVID Alliance and the EveryLife Foundation for Rare Diseases to participate FROM HOME in this virtual event.

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In 2021, the Solve M.E. has expanded our annual advocacy events in order to bring together advocates from many complex chronic illness communities, including: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), just to name a few. The Long COVID Alliance joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research that will address the challenges faced by “COVID long haulers” and related post-viral illnesses.

The issues brought to the forefront by Long COVID have a direct impact on our communities. This is why it is important that we come together to amplify our voices on Capitol Hill.

Working together with these patient-advocates, their loved ones, scientists, clinicians and caregivers from across the country will strengthen our collective call to action.

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!

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

 

Advocacy Week Event Schedule:

4/13: Congressional Meeting Training (10 am PT/ 1 pm ET). 4/14: Advocacy Day Office Hours- Spoonies, Families and Friends 11 am PT/2 pm ET; Team Leads 4 pm PT/7 pm ET. 4/15: Advocacy Day Office Hours- Long COVID 11 am PT/2 pm ET; First Time Advocates 4 pm PT/7 pm ET. 4/16: Advocates Social Happy Hour (4 pm PT/7 pm ET). 4/19: Advocacy Day Welcome and Virtual Keynote Address (10 am PT/1 pm ET). 4/20: Advocacy Day Remote Congressional Meetings (registration required). 4/21: Social Media Action Day. 4/22: EmPOWER ME Roundtable Workshop (TBD). 4/23: EmPOWER ME Office Hours (TBD)
Calendar of events

 

Energy Guide: Congressional Training (4/13): medium to high energy and recording available. Advocacy Day Office Hours (4/14 and 4/15): low to medium energy, optional. Advocates Social Happy Hour (4/16): medium energy, optional. Welcome and Virtual Keynote (4/19): low to medium energy, optional and recording available. Advocacy Day (4/20): high energy. Social Media Action Day (4/21): low energy. EmPOWER ME Roundtable (4/22): medium energy, optional. EmPOWER ME Office Hours (4/23): low to medium energy, optional
Advocacy Week Energy Guide

Advocacy Day Welcome and Virtual Keynote Address:

We’re thrilled to announce that our kickoff event will take place on Monday, April 19, at 10 am PT/ 1 PM ET, featuring a virtual keynote address by our community champion, Representative Jamie Raskin (MD-08).

In 2020, Rep. Raskin introduced H.R. 7057, The Understanding COVID-19 and ME/CFS Subsets Act, the first piece of legislation to authorize funding from the National Institutes of Health (NIH) for ME/CFS research and education.

Raskin will be joined at the event by Maryland Secretary of Aging and Solve M.E. Board Member Rona Kramer, disabled registered nurse and patient expert Ashanti Daniel, BSN, RN, and Sarah Bekins Tompkins, Rare Disease Legislative Advocates (RDLA) Advisory Committee Member and EDS patient advocate.

April 19, Advocacy Day Welcome and Virtual Keynote Address

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.

Training:

Advocates are strongly encouraged to attend the training session on April 13, but this is not a requirement to participate. There will be a recording available.  SIGN UP FOR TRAINING HERE.

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

Office Hours (all) & Advocates Social Happy Hour

Meeting ID: 858 1533 9468

Passcode: advocacy

One tap mobile

+16699009128,,85815339468# US (San Jose)

+12532158782,,85815339468# US (Tacoma)

 

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.

One tap mobile; US: +16699009128,,81571632408#  or +12532158782,,81571632408#

 

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.

How do I use Zoom?

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

Other questions?

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

 

Updates & News

March 29, 2021: Your Guide to Advocacy Day

Important Dates and Energy Requirements

In 2021, the Solve M.E. has expanded our annual advocacy events in order to bring together advocates from many complex chronic illness communities, including: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD), mast cell activation syndrome (MCAS) and rare diseases, just to name a few. This year, “ME/CFS & Long COVID Advocacy Day” welcomes our new partners from the Long COVID Alliance and the EveryLife Foundation for Rare Diseases to participate FROM HOME in this week of virtual events. Working together with these patient-advocates, their loved ones, scientists, clinicians and caregivers from across the country will strengthen our collective call to action.

Together, in one voice, we will fight for a stronger federal investment in research, education, and care for complex, chronic illnesses. “Our illnesses may be invisible, but we are not!”

While there are 14 different amazing virtual events you can join as part of Advocacy Week this year, there are only two which are identified as “required” participation for volunteers, the 1) Tuesday April 13th CONGRESSIONAL MEETING TRAINING and 2) Tuesday April 20th ADVOCACY DAY REMOTE CONGRESSIONAL MEETINGS.

  • Tuesday April 13th CONGRESSIONAL MEETING TRAINING (Register HERE)

We are currently working as quickly as possible with our congressional partners to introduce and finalize legislative actions calling for additional funding for research, education, and patient-care. These actions will be discussed in detail at our virtual CONGRESSIONAL MEETING TRAINING on Tuesday April 13 at 10am PT / 1pm ET. This event is 1 hour long and will require MEDIUM energy (e.g. note taking, moderate cognitive effort). We strongly encourage all volunteers to attend or watch this training. You can register HERE to receive reminders, but registration and live attendance are not required for this event. We’ll have a video recording and a short 1-page summary with everything you need to know. If you still have questions, join us at any OFFICE HOURS (see calendar below) where you can receive 1-on-1 zoom support to ensure you have the best possible ADVOCACY DAY experience.

  • Tuesday April 20th ADVOCACY DAY: Remote Congressional Meetings

This year’s keystone event is Advocacy Day, on Tuesday, April 20 between 9am – 5pm ET.

This VIRTUAL event connects you, and hundreds of other advocates like you, directly with your members of Congress using personalized online conversations. 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, Long COVID, and other complex chronic illnesses.

You will be paired with other advocates in groups for 1-5 conference call or Zoom meetings with your Senators, Representatives, or members of their staff. Please plan for 25 – 35 minutes for each meeting. You should anticipate between 1 – 3 hours of time expended (depending on the number of meetings we are able to secure for you), requiring HIGH energy (e.g. note taking, extended cognitive effort).  We will provide you with all of the talking points you need. 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.

Congressional Meeting Logistics and Access

Your customized meeting requests and schedule are being coordinated by our team at Advocacy Associates. You will receive an email with 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.

Beginning Friday April 2, you will also have access to your meetings status at any time by using the full-service ONLINE PORTAL, which you can access on your phone, tablet, or computer. Remember which email address you used to register! This email address will be your login for the platform (no passwords necessary!) Next week, we’ll email you additional instructions to access your ONLINE PORTAL. To watch a quick video tutorial about your personal online portal tool, click here.

February 18, 2021: Registration Opens for April 20 Advocacy Day!