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.

TAKE ACTION TODAY!

Our Advocacy Day Remote Action Kit is here! This one-stop-advo-shop has everything you need to make the most of your experience.
The Action Kit makes it easy to:
  • Send an email to your representatives and senators
  • Tweet directly at your member of Congress
  • Share our custom Advocacy Day graphics on social media
  • Use our customized GIPHY stickers
  • Spread the word about Advocacy Week and put pressure on Congress to pass the COVID-19 Longhaulers Act

Check it out at https://actionkit21.com/.

 

Para information in espanol, clic aqui.

 

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:

Calendar of events

Advocacy Week Energy Guide

Congressional Meeting Training:

Watch the recording of the full-length training session here:

Or watch shorter videos of the training session, divided into three parts at the links below:

View the slide deck for the presentation here.

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

Watch video from the event here:

Check out the Facebook page for this event:

https://fb.me/e/8DQhbjY5g

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 sharing them ensures 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.

If you are one of the nearly 1,000 people registered to participate in Advocacy Day, you should have received your personalized meeting schedule via email. You can also check your meeting schedule by signing into the Advocacy Day portal at: 

 https://solvemecfs.constituentvoice.net/

The home page has all of your meetings in Eastern time.

If you are not registered, don’t worry – you can still make your voice heard using our Remote Action Kit!

Just added! A special event with Rep. Don Beyer (D-VA) and Rep. Jack Bergman (R-MI) on Wednesday, April 21

As Long COVID brings renewed attention to the debilitating and chronic illness known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a record number of advocates are virtually gathering on Capitol Hill for Solve M.E.’s 5th Annual Advocacy Week.

Rep. Don Beyer (D-VA) and Rep. Jack Bergman (R-MI) will lead a special bi-partisan announcement regarding funding on April 21. You won’t want to miss it!
Join the live announcement at 12:00 pm PT / 3:00pm ET via Zoom.

Watch the video from the event here:

Read the press release for the announcement here.

EmPOWER M.E. Roundtable:

The 3rd Annual EmPOWER M.E. Roundtable will take place on Thursday April 22 at 10 am PT/ 1 pm ET. This event will be an interactive online education workshop on elevating your voice in research.

In this hour-long virtual roundtable, patient advocates and citizen scientists share their experiences in navigating the world of research and clinical studies and how to make your voice heard at every level of research. Learn how to overcome barriers to equitable access and get involved in quality research opportunities. You’ll also get a preview of the latest ME/CFS and Long COVID data and insights from the patient-centered You + ME Registry and Biobank and learn more about the real cost of rare disease in America. 

Don’t forget special guest and keynote remarks from Representative Don Beyer, author of the COVID-19 Longhauler Act.

Watch the event here:

2021 Advocacy Week Talking Points:

  • Solve M.E. Advocacy Day Remote Congressional Meeting Training: Your Talking Points
  • View the slide deck for the training presentation here
  • Representative Don Beyer (VA-08) and Representative Jack Bergman (MI-01) will be introducing the COVID-19 Longhaulers Act, which would authorize and fund research and education initiatives to benefit so-called “longhaulers,” an estimated 25–35% of COVID-19 patients who experience long term effects of COVID-19 infections. Read more about the Longhaulers Act here.

Materials You Can Share:

 

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!