Welcome to ME/CFS Advocacy Week and DC Lobby Day 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.



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.





It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.



QUICK LINK TO ME/CFS ADVOACY DAY REGISTRATION FORM
** This page will be updated frequently. Check back to for news and alerts. **

 

Update & News

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 and at the National Institutes of Health Bethesda, MD campus from Sunday April 19, 2020 – Wednesday April 22, 2020.

Tuesday April 21, 2019 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.

Events in Washington D.C.

Full event schedule coming soon!

ME/CFS Advocacy Week 2020 - FAQ

What should I expect on Tuesday April 21st?

ME/CFS Advocacy 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. The day will begin with a short welcome briefing, breakfast, and training at our very own “ME/CFS Basecamp,” on Capitol Hill. 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 “ME Basecamp,” a staging area on Capitol Hill, just for our ME/CFS Advocacy Day participants. This year, we will also have a “Quiet Room” which 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, 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 between 3 – 8 meetings and we will customize your schedule to your ability and capacity.

What is the cost to attend ME/CFS DC Lobby Day?

It is free to participate. Our team will provide you with training, materials, maps, guides, a personalized schedule, a light breakfast, and a “base-camp” room with refreshments (where you can rest throughout the day).

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.

Do I need advocacy experience to attend ME/CFS DC Lobby 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 Lobby Day is the opportunity to learn from SMCI and #MEAction staff and other experienced advocates.

I use a wheelchair/mobility assistance devices and I cannot walk very far. Can I still participate?

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 use the registration form to indicate your needs and we will make arrangements to accommodate.
A limited number of wheelchairs will be available for use on Tuesday, April 21, 2020. Please contact solvecfs@solvecfs.org to request the use of these wheelchairs.

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

You can represent up to FOUR (4) different congressional districts during your visit, your own district and three others BY-PROXY. These BY-PROXY individuals you choose to represent can include family members, loved ones unable to travel, or other people with ME/CFS you are authorized to represent.

On the registration form, there is a specific question which states “Please indicate if you will be representing someone else BY-PROXY (meaning they will not attend in person).” After you select the number of people you are representing, additional text boxes will appear. Please enter the information for the people you will represent BY-PROXY in that area.

We will request meetings on behalf of you AND the individuals you are representing.

How will my participation in ME/CFS DC Lobby 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 Lobby 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 face-to-face 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 Lobby 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 3 meeting schedule, but feel free to contact them about other issues or requests.

What should I know about traveling to Washington DC?

Washington DC has many wonderful attractions, restaurants and museums to visit. Learn more and get a free visitors guide at: https://washington.org/

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

What should I bring? What should I wear?

SMCI and #MEAction 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 encourage the participants to wear BLUE and 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.

Hosting a Local Event:

More information coming soon!

Online and Call-in Actions:

More information coming soon!