Welcome to ME/CFS Advocacy Week and DC Lobby Day 2019

ME/CFS Advocacy Week brings people with 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 Lobby 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.



This year, the Solve ME/CFS Initiative is partnering with #MEAction. | READ MORE HERE


Please scroll down local, phone, and online actions.

QUICK LINK TO ONLINE MEETING REPORT FORM
QUICK LINK TO ONLINE CONGRESSIONAL ACTION TOOL

Help Plan your trip with the Advocacy Day DC Walkthrough

** This page will be updated frequently. Check back to for news and alerts. **

Online Training Events

ME/CFS Advocacy Week Online Training Part 1: Best Practices for a Successful Advocacy Meeting 

Wednesday, March 13, 2019
1:00 PM - 2:00 PM EDT//10:00 AM - 11:00 AM PDT


Solve ME/CFS Initiative and #MEAction present an online workshop to help you host a successful meeting as part of ME/CFS Advocacy week.

Watch the recording at: https://youtu.be/5iMlqoUkI8A

Download the power point slides: HERE

Read the Webinar Q&A: HERE

ME/CFS Advocacy Week Online Training Part 2: Welcome to DC: #CongressFight4ME

Wednesday, March 27, 2019
1:00 PM - 2:00 PM EDT//10:00 AM - 11:00 AM PDT


Solve ME/CFS Initiative and #MEAction present an online workshop to walk you through joining us in Washington DC for ME/CFS Advocacy Week & Lobby Day, step-by-step.

Watch the recording at: https://youtu.be/5LJFldl1I5o

Download the power point slides: HERE

Read the Webinar Q&A: HERE

Events in Washington D.C.

All Washington DC events are free for patients, caregivers and other advocates. Attendees are responsible for their own travel expenses. If you require assistance with your travel expenses, a limited number of Lobby Day 2019 Travel Awards are available. See information below.

Advanced Registration is required to participate on Wednesday April 3rd

**DEADLINE for Lobby Day 2019 Registration is March 6, 2019**


Tuesday, April 2nd 9:00am - EmPOWER M.E. Roundtable


Solve ME/CFS Initiative (SMCI) is hosting our first ever EmPOWER M.E. Roundtable on April 2, 2019 moderated by Board Certified Patient Advocate, Sharon Stevenson, DVM PhD. As part of Advocacy Week in Washington DC, this event is free for all who attend and will also be livestreaming online for those who can’t join us in person.

Join us in person:
Tuesday April 2
9:00am - 12:30pm
Congressional Ballroom
Marriott Bethesda Hotel
5151 Pooks Hill Rd. 
Bethesda, MD 20814
Breakfast provided

Join us online - register here to watch live:

http://go.solvecfs.org/e/192652/forms-zr54zuv021r8mg-/vg1z7/105055320?h=bfCcHcL96iNngdMhdeVcaf4zd-hPT95trN7MyZkQBJY


The EmPOWER M.E. Roundtable will feature two workshop-style panels:

Session 1: “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome”
Exercises and ideas for empowering your experience in the medical environment


Dr. Nancy Klimas: ME/CFS clinician and researcher, Director of the Institute for Neuro Immune Medicine, Nova Southeastern University, Nova Southeastern University
Dr. Camille Birch: Ramsay Award Research Awardee and person with ME, Genome Analyst, HudsonAlpha Institute for Biotechnology
Eric Braun, PhD: caregiver, partner, and ME Advocate


Session 2 – “Advocacy: Your Story, Your Impact”
How telling your story can empower you and make change by combining advocacy and self-representation


Secretary Rona Kramer: Secretary Maryland Department of Aging, Former State Senator, family member of person with ME
Emily Taylor M.A.: Director of Advocacy, Solve ME/CFS Initiative, and caregiver


Join us online - register here to watch live:

http://go.solvecfs.org/e/192652/forms-zr54zuv021r8mg-/vg1z7/105055320?h=bfCcHcL96iNngdMhdeVcaf4zd-hPT95trN7MyZkQBJY

Tuesday April 2nd 3:00pm – Advocacy Training Workshop and Networking Reception


Continuing on April 2nd, Solve ME/CFS Initiative (SMCI) and #MEAction will be hosting an in-person Advocacy Training Workshop and ME/CFS Networking Reception. Solve ME/CFS Initiative is sponsoring a live-web stream of the training workshop for those who are unable to attend in person.

Join us in person:
Tuesday April 2
3:00pm – 8:00pm
Marriott Bethesda Hotel
5151 Pooks Hill Rd. 
Bethesda, MD 20814

April 2nd Agenda:

1:00pm – 3:00pm: Check-in & Registration | Congressional Ballroom

1:00pm – 2:30pm: Video Interviews – Share your story!

3:00pm – 3:45pm: Training Part 1 (general best practices) | Congressional Ballroom

3:45pm – 4:15pm: Break

4:15pm – 4:45pm Training Part 2 (Prime Advocacy/Mobile Tool) | Congressional Ballroom

4:45pm -5:00pm: Break

5:00pm – 6:00pm: Training Part 3 (ME/CFS talking points/asks) | Congressional Ballroom

6:00pm – 8:00pm: ME/CFS Advocates Networking Reception | Senate Suites (DINNER and cash bar)

** Please bring your cell phone or tablet to this session

Helpful Notes for Tuesday April 2nd:

  • Parking at the Marriott Bethesda Hotel is $17 daily. If you are staying at the hotel, you can use your room key to enter and exit the parking area. Ask at the front desk if you would like your parking added to your bill.
  • Early Check-in will be available in the lobby of the Bethesda Marriott from 3pm – 6pm on Monday April 1st
  • The Bethesda Marriott hotel offers free shuttle service between the Metro at Medical Center, The Marriott Bethesda Hotel, and Downtown Bethesda area. The shuttle runs every 30 minutes. You can try to find parking near these areas and take the Hotel shuttle if you do not wish to pay for parking. Limited street parking is available near the hotel. Check the street signs for hours and availability.
  • For the events on Tuesday April 2nd, you may find it easier to enter at the “Congressional Suites” entrance, also called “entrance E.” It is a shorter walk to the event. Upon entering the hotel parking lot, turn RIGHT and take a ticket from the dispenser to open the control arm. When you circle the parking area, you will see the “CONGRESSIONAL SUITES” entrance clearly labeled.
  • General WIFI internet is available by logging into “Marriott - conference’ or “Marriott - lobby” and accepting the terms of service
  • ME/CFS Advocates Networking Reception will now include *dinner* - with gluten free and vegetarian options. Come hungry!

Wednesday April 3rd ME/CFS Advocacy Day – Capitol Hill

Time

   Event

Location

7:30am

1st Bus to Capitol Departs (ADA)

Marriott Bethesda – ”COOPERS MILL” door

8:10am

2nd Bus to Capitol Departs

Marriott Bethesda – ”COOPERS MILL” door

8:30am

Networking Breakfast Begins

Cannon 121 “Basecamp”

9:10am

3rd Bus to Capitol Departs (ADA)

Marriott Bethesda - ”COOPERS MILL” door

9:15am

Advocacy Day Team Picture

Cannon 121 “Basecamp”

9:40am

FINAL Bus to Capitol Departs

Marriott Bethesda - ”COOPERS MILL” door

10:00am

Congressional Meetings Begin

11:00am

Snacks & Refreshment service begins

Cannon 121 “Basecamp”

1:00pm – 3:00pm

Tell your ME Advocacy story – recording session

Cannon 121 “Basecamp”

4:00PM

Congressional Meetings End

4:00pm – 6:00pm

ME/CFS Champions Reception

Cannon 122 “Basecamp”

 

Helpful Notes for Wednesday April 3nd:

  • The 1st and 3rd bus are ADA accessible
  • You do not need to attend the 8:30am networking breakfast if you do not wish to
  • Cots, blankets and “horizontal space” will be available in Basecamp (Cannon 121)
  • Street parking (if you are lucky) is available around the Capitol – paid garages can be found at Union Station and the Hall of States Building on the Senate (north) side of the Capitol
  • Plan to meet your group in the hallway outside of your meeting location 15 minutes prior to your meeting.
  • Save some steps! Take a moment to look at a map, look for a sign, or ask for directions to find the closest path to your meeting.
  • Ask an intern from your first meeting to walk you to your next meeting!
  • Use your mobile tool to make notes
  • Remember to fill out your Online Reporting Form

Booking a Hotel

A discount room block is available from Monday April 1 – Sunday April 7 at the Marriott Bethesda Hotel. These rooms are available for both Lobby Day and NIH Conference attendees.



If you are joining us in Washington D.C., you’ll need to make your reservation directly with the hotel and you will be responsible for your own travel cost. Discount Room block rates are available three days before and after the scheduled events.

Discount hotel rate is $199 a night and is also available for the “Accelerating Research on ME/CFS” conference. A shuttle is available from the nearby metro station directly to the Masur Lecture Hall on the NIH campus.

ME / CFS Advocacy Day Hotel Reservations

**Marriott is extending deadline to Thursday, March 7; they are adding rooms on April 1 and 4; those rooms will be available starting a noon (ET) March 5. **

Also, you may use the numbers below to make reservations by phone. Note that using the direct hotel contact number won’t give them access to our special room block/rate.

Reservations Toll Free: 18002289290
Reservations Local Phone: 18003933412

Room block name: ME/CFS Advocacy Day

Hotel rooms can accommodate up to 4 people; we recommend rooming together to reduce costs.

You are welcome to make your own arrangements – staying in the hotel block is *not* required for participation in ME/CFS Advocacy Day.

Lobby Day 2019 Travel Awards – Application Deadline Closed

Solve ME/CFS Initiative and #MEAction are pleased to make available a *LIMITED* number of travel awards.

The Travel Award application is available for download here (WORD) or (PDF).

You can complete the application digitally by using the WORD (.DOC) application. Please save as a new file called “SMCI 2108 Lobby Day 2019 Travel Award Application –  (YOUR NAME)” and email to MEAdvWeek19@gmail.com

You can also print and complete the application by hand using the ADOBE ACROBAT (.PDF) application. Please print and complete using Blue or Black ink. You can scan or send a picture of your completed application and return by e-mail to MEAdvWeek19@gmail.com or mail the completed application to:

Solve ME/CFS Initiative
5455 Wilshire Blvd.
Suite 1903
Los Angeles, CA 90036

All applications must be received by Thursday, February 28 to be considered. All applicants must register to attend ME/CFS Advocacy Day in order to be considered for a travel award.

Connecting with other D.C. attendees

If you are looking to connect with other ME Advocates to carpool, share a room, or just introduce yourself – join the ME/CFS Advocacy Week and DC Lobby Day 2019 Facebook Group

Questions or Special Requests?

If you need to contact our team, please send an e-mail to MEAdvWeek19@gmail.com

If you have special requests regarding your Lobby Day meeting scheduling (such as group partners), please include those details in your registration form.

If you have other special requests (such as dietary needs), please e-mail MEAdvWeek19@gmail.com. We will do our best to accommodate every special request, but due to the large volume of attendees, we cannot guarantee your request will be met.

ME/CFS DC Lobby Day 2019– FAQ

What should I expect on Wednesday April 3rd?

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 at 8:30am with a short welcome briefing, breakfast, and training at our very own “ME Basecamp,” in Canon 121 on Capitol Hill. A bus will be available to transport you to Capitol Hill from the Marriott Bethesda Hotel in the morning. Throughout the day on Capitol Hill, you will be able to take advantage of “ME Basecamp,” a private room on Capitol Hill, just for our ME/CFS Advocacy Day 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, 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 formto indicate your needs and we will make arrangements to accommodate.

A limited number of wheelchairs will be available for use on April 3rd. Please contact MEAdvWeek19@gmail.com 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 different congressional districts during your visit. This 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 space to add the address to represent others. If you are represent more than one other person, please e-mail the additional address of the individual you are representing to: MEAdvWeek19@gmail.com

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.

NIH “Accelerating ME/CFS Research” Conference:


To register for NIH “Accelerating Research on ME/CFS” Conference, in partnership with Solve ME/CFS Initiative on April 4 & 5, 2019 click here

Hosting a Local Event:

Local District Meeting Handbook: HERE 
City & County Proclamation Guide: HERE

Online and Call-in Actions:

Call-in Senate Action Handbook: HERE
Social Media Action Handbook: HERE