Welcome to ME/CFS Advocacy Week 2020
ME/CFS Advocacy Week brings people with Myalgic Encephalomyelitis (ME), their loved ones, advocates, scientists, clinicians and caregivers from across the country together to call for more action and research funding, meet other advocates, and share their unique stories with members of congress, together in one voice. The keystone event of ME/CFS Advocacy Week is Washington DC ME/CFS Advocacy Day, a full-day Capitol Hill storm where hundreds of advocates meet face to face with members of congress and their staff.
This year, ME/CFS Advocacy Week has gone digital with entirely remote events and actions you can join from the comfort of your home.
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
“Chronic neurological problems [like ME/CFS] have been tied to other types of coronaviruses in the past…We must really look hard, particularly with these types of coronaviruses, for chronic effects that are in the neurological category.”
– Dr. Mady Hornig, Director of Translational Research at the Center for Infection and Immunity
ME/CFS epidemics have historically followed viral outbreaks and the majority of people with ME/CFS were triggered by a viral infection. The field of ME/CFS research is needed now more than ever, to find answers and improve the lives of millions.
Solve M.E. is calling for immediate response measures for ME/CFS in the next COVID-19 response package. We are recommending $60m to be authorized for NIH post-viral neuro-immune research, specifically focusing on ME/CFS and COVID-19.
Join us by using our one-stop online action center for an easy walkthrough of email, call-in and social media actions. This online portal will help you take all three actions in under 15 minutes – all you need is your zipcode to get started!
Online Actions and Toolkits:
Use the ONLINE REMOTE ACTION KIT for to automatically generate twitter messages!
Or CLICK HERE to automatically generate an email message to your members of Congress!
Or download your Tweet D.C. Advocate Kit (free PDF) with customizable graphics and posts; everything you need to support ME/CFS advocacy on social media! (Twitter, Facebook, and Instagram)
Use the toolkits above to take the following actions:
- Sunday April 19th – Sunday April 26th: Instagram Stories
Make the invisible, visible, by sharing a snapshot of your year with ME/CFS on Instagram stories. Stories only last for 24 hours, so try sharing a story several times this week. Be sure to check out the GIPHY stickers for ME/CFS and Solve ME/CFS to spice up your post!
- Wednesday April 22nd 10:00am – 7:00pm ET: Tweet-a-Thanks!
Share our Congressional Thank you video with your member of Congress using Twitter. Our ONLINE REMOTE ACTION KITwill customize and generate your twitter messages.
- Friday April 24th ALL DAY Friday Facebook Flood (social media)
Let’s flood some facebook feeds with information about ME/CFS.
Order a Tweet D.C. Champion Package ($35) with customizable graphics and posts available online and mailed to your home; everything you need to support ME/CFS advocacy on social media! (Twitter, Facebook, and Instagram). Plus, free Solve M.E. gifts!
Call-in Actions and Toolkits:
Use the ONLINE REMOTE ACTION KIT for to automatically find phone numbers and scripts!
Or download your D.C. Remote Advocate Kit (free PDF downoad) with everything you need to call or fax your Members of Congress to support ME/CFS advocacy in D.C. from home.
- Tuesday April 21st: Solve ME/CFS Advocacy Day Pre-registration required
If you’ve pre-registered, you’ll receive your personal meeting schedule by email. Don’t forget to check out our Solving M.E. Together: Remote Meeting Training. Didn’t pre-register? No problem! Use the toolkits above to call your members of Congress to celebrate the day!
- Thursday April 23rd: Can You Hear M.E. Now?
Today, we’re confirming our message was heard by following up with phone calls of support. You can make these phone calls even if you participated in a meeting on Tuesday or already called before. Call again, anytime!
Order a D.C. Remote Champion Package ($65) with prefilled, packaged, and customized scripts and letters mailed to your home with everything you need to call or fax your Members of Congress to support ME/CFS advocacy in D.C. from home. Plus, free Solve M.E. gifts!
Materials You Can Share:
- *Key document this year* Solve M.E. COVID-19 Congressional Recommendations
- Solve ME/CFS: Advocacy Week 2020 (5min Video) – a snapshot of the disease impact, constituent experience, and policy needs.
- FY 21 House Appropriations Letters ME/CFS – LHHS & DEFENSE (PDF)
- “What does COVID-19 portend for ME/CFS?” (PDF) – Dr. Mady Hornig, Associate Professor of Epidemiology, Columbia University Medical Center
- Could the coronavirus trigger post-viral fatigue syndromes? – NewScientist
- Scientists warn COVID-19 could lead to neurological complications in some patients – The Globe and Mail
- The other potential coronavirus catastrophe no one is talking about – The Canary
Updates & News
April 16, 2020: Solve ME/CFS Advocacy Day Toolkits now available!
Solve M.E. has made advocacy easier than ever with three free toolkits. Available online or by download, these toolkits have easy check-lists for actions at any skill or energy level.
- Remote Action Kit All three actions with an interactive online portal. Just enter your zipcode and your call actions, social media actions, and email actions are just a few clicks away. In less than 15 minutes, this web portal will guide to take all THREE congressional actions, and fill in the details for you.
- Tweet D.C. Advocate Kit (free PDF download): If you want to show more flare with your social media actions, check out the Tweet D.C. Advocate Kit with customizable graphics and posts; everything you need to support ME/CFS advocacy on social media! (Twitter, Facebook, and Instagram)
- D.C. Remote Advocate Kit (free PDF download): For beginner, intermediate and advanced phone or fax actions, check out the D.C. Remote Advocate Kit. Here, you’ll find everything you need to call or fax your Members of Congress to support ME/CFS advocacy in D.C. from home.
April 8, 2020: Full Schedule of ME/CFS Advocacy Week Online Events and Actions
Solve M.E. is pleased to announce the full online transition of your ME/CFS Advocacy Week schedule. Check out these expanded opportunities to make your voice heard, from the comfort of home!
- Thursday April 16th 5:00pm – 7:00pm ET: Solving M.E. Together: Remote Congressional Meeting Training
- Friday April 17th 4:00pm – 9:00pm ET Solve M.E. Advocacy Day Office Hours
- Monday April 20th 1:00pm – 2:30pm ET: 2nd Annual EmPOWER M.E. Roundtable: “Navigating Public and Private Disability Insurance with ME/CFS”
- Friday April 17th 4:00pm – 9:00pm ET: EmPOWER M.E. Office Hours
- Sunday April 19th – Sunday April 26th: Instagram Stories (social media)
- Tuesday April 21st 8:00am – 5:00pm ET: Solve ME/CFS Advocacy Day!
- Wednesday April 22nd 10:00am – 7:00pm ET: Tweet-a-Thanks! (social media)
- Thursday April 23rd 9:00am – 5:00pm ET: Can You Hear M.E. Now?! (call/fax)
- Friday April 24th ALL DAY Friday Facebook Flood (social media)
March 26, 2020: Online Events Announced and Champions Kits now available to order
As Solve M.E. Advocacy Week goes online, we are pleased to bring you CHAMPIONS KITS to assist your home advocacy, now available for order. Save the dates for the great events!
March 10, 2020: Advocacy Week goes ONLINE! D.C. In-Person Events cancelled due to Coronavirus (COVID-19) concerns
Solve M.E. Advocacy Week activities this April in Washington, D.C., will be transitioning to entirely remote formats and our team will be cancelling in-person events to protect and preserve the health of our ME/CFS community. We are pleased to announce that Advocacy Day congressional meetings will STILL take place on Tuesday, April 21 by remote online and phone systems. REGISTER by March 27th to participate in remote meetings.
February 6, 2020: D.C. Event Details and Hotel Block announced
We are pleased to announce that ME/CFS Advocacy Week activities will be hosted at Falls Church Marriott Fairview Park. A room block has been secured at our lowest rate yet - $189 / night. Transportation will be provided to and from the hotel for the events on Tuesday April 21 on Capitol Hill and Wednesday April 22 at the National Institutes of Health.
December 10, 2019: Events in Washington D.C. and Travel Awards Announced
Solve M.E. is pleased to announce the 2nd EmPOWER M.E. Roundtable on Monday April 20, 2020 followed by ME/CFS Congressional Advocacy Training and Networking Reception. Both Monday events will be held at the same location. Tuesday April 21, 2020 will be our ME/CFS Advocacy Day on Capitol Hill. Wednesday April 22, 2020 will take place at the National Institutes of Health, Bethesda MD campus. Transportation to and from Solve ME/CFS Advocacy week events and the hotel will be provided.
Applications for the Solve M.E. Travel Awards are now closed. Travel stipends of up to $500 will be awarded for individuals or organizations wishing to participate in-person in Washington D.C. The inaugural 2020 Community Advisory Council will participate in a blind peer review process to select award recipients. Winners will be announced in early March of 2020.
October 18, 2019: ME/CFS Advocacy Week Dates Announced
ME/CFS Advocacy week returns from April 19 – 26, 2020. Online actions and social media campaigns will be active throughout the week. In-Person events will take place in Washington, DC from Sunday April 19-21, with a Public Lecture at the National Institutes of Health in Bethesda, MD on April 22, 2020.
Tuesday April 21, 2020 will be our ME/CFS Advocacy Day on Capitol Hill. It is free to participate for all events in-person but, REGISTRATION is required to participate in ME/CFS Advocacy Day on Tuesday April 21, 2020.
Timeline of Online Events and Actions:
Events in Detail
- Thursday, April 16th 5pm – 7pm ET: Solving M.E. Together: Remote Congressional Meeting Training: Join Solve M.E. Advocacy Director, Emily Taylor and our Prime Advocacy partners to learn everything you need to know for Advocacy Day remote meetings on Tuesday April 21 including 1) How to use your mobile app, 2) Meeting best practices, and 3) a complete overview of our advocacy strategy and requests.
Download PDF slides here
- Friday April 17th 4pm – 9pm ET: Solve M.E. Advocacy Day Office Hours Have questions about Advocacy day meetings? Congress? Need help with your App? Stop by for a ZOOM video conference with your Solve M.E. and Prime Advocacy teams to chat. Zoom is available by computer, tablet, or phone.
- Monday, April 20th 1pm – 2:30pm ET: 2nd Annual EmPOWER M.E. Roundtable: Navigating Public and Private Disability Insurance with ME/CFS
Sponsored by: Bateman-Horne Center
Join the 2nd Annual EmPOWER M.E. Roundtable on Monday, April 20th at 1pm ET for an online education workshop, “Navigating Public and Private Disability Insurance with ME/CFS.” Welcome back moderator Board Certified Patient Advocate, Sharon Stevenson, DVM, PhD leading our expert panel of legal and medical experts as they share their advice on applying, appealing, and documenting your case for Public and Private Disability Insurance with ME/CFS.
- Monday, April 20th 4pm – 9pm ET: EmPOWER M.E. Office Hours Have questions about Advocacy day meetings? Congress? Need help with your App? Stop by for a ZOOM video conference with your Solve M.E. and Prime Advocacy teams to chat.
- Tuesday, April 21st, 9:00am – 5:00 pm: ME/CFS Advocacy Day Congressional meetings will take place by phone.
Events in Washington D.C. - Cancelled
ME/CFS Advocacy Week 2020 - FAQ
Are events happening in Washington D.C?
No. Due to confirmed COVID-19 (coronavirus) cases in Washington D.C., potential exposure among Congressional offices, new CDC guidelines, voluntary quarantine of some Members of Congress and staff, and with input from the ME/CFS community, Solve M.E. made the difficult decision to cancel in-person events for Advocacy Week 2020 and transition to online and remote platforms.
Is ME/CFS Advocacy Day still happening?
Yes! ME/CFS Advocacy Day congressional meetings will STILL take place on Tuesday, April 21 by remote online and phone systems.
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 Solving M.E. Together: Remote Congressional Meeting Training Thursday April 16 at 5pm ET: Join Solve M.E. Advocacy Director, Emily Taylor and our Prime Advocacy partners to learn everything you need to know for Advocacy Day remote meetings on Tuesday April 21 including 1) How to use your mobile app, 2) Meeting best practices, and 3) a complete overview of our advocacy strategy and requests.
What if my loved one lives in another congressional district or another State?
Due to the remote transition, we are no longer able to offer “proxy” representation. You may represent your own district in remote Congressional meetings by signing up in our new system and your loved ones may also sign up to participate. However, you cannot participate in a remote meeting on their behalf.
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 17, which 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 Prime Advocacy 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 conference calls. If we are unable to accommodate your meeting request, you will be notified by email no later than Friday April 17.
How can I coordinate with other advocates in my group?
Solve M.E. protects your data and your privacy and we will never share your personal contact information without permission. If you want to coordinate with your team, we recommend you join the ME/CFS Advocacy Week and DC Lobby Day 2020 Facebook group. Please be mindful that this is a public group.
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 DC Advocacy Day meeting.
Our partners at Prime Advocacy 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, Prime Advocacy 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 21 meeting schedule, but feel free to contact them about other issues or requests.
Feel free to email our team at SolveCFS@SolveCFS.org