Advocate for ME on the Hill! Only One Week left to Register!

You still have one week left to register for Advocacy Day 2019 in Washington, DC!

You may be trying to decide whether or not you should come (and, please, put your health first) or send a loved one in your place, so we thought we would ask some people who have attended about their perspective on Advocacy Day.

We will meet with our Congressional representatives on Wednesday, April 3rd, and host our in-person training the prior afternoon on Tusesday, April 2nd. If you are unable to make it on Tuesday, we will have online trainings available prior to Advocacy Week so that you can prepare ahead of time. See the website for more details.

Register for Advocacy Day 2019

Gail Cooper, Co-Lead on #MEAction’s Congressional Volunteer Team 

Why come to Advocacy Day? You might have expected me first to talk about how important a day it is but, actually, the first reason is that you will experience an incredible high. I certainly did – the energy and spirit was palpable. I loved meeting so many people from our community. And for many participants, it is actually the first time in their lives they will meet other people with ME, and the first time they will meet people with whom they’ve only had online contact.

I also loved finally acting up! (Politely, of course – these are people we want to “friend,” not alienate.)  Walking the halls of Congress is thrilling as well. You pass by the offices of so many members you’ve read about and, if you’re lucky, will actually run into or meet.

Lastly, there is the joy of seeing unexpected light bulbs go off when we make a connection or see an impact made. I was talking to a staffer and as we were winding up, he said: “Oh my, I think my mother might have had ME/CFS. We just thought she was malingering.”  

Of course, our main reason for going is that Congress never acts unless prompted. They need to hear from their constituents to take on our cause. We’re clearly not overwhelming our representatives with campaign contributions so meeting with them is especially critical. Our case is compelling but it is the face-to-face interaction – where we tell our stories – that has the biggest impact. We have to touch hearts and foster human connections in order to succeed. Our representatives also need to see that we are holding them accountable.

Beverly Weiss, Congressional Volunteer:


Advocates Beverly (left) and Bobbi (right) meet with Congressman Mark DeSaulnier’s health care legislative aide, Ethan (center).




Advocacy Day May 15, 2018 was one of the most extraordinary experiences of my life. I had no background as an advocate, but the training was thorough and my first meetings included experienced advocates. I was awed by my first visit to the halls and offices of Congress and was uplifted and motivated when I met other advocates at the training and at meals.

During a meeting with a congressman who had never heard of ME, he told us, “You need to lobby and need to do it often.”

I urge you to participate if you can afford it, monetarily and physically. As the congressman said, “You need to lobby and need to do it often.

Ben HsuBorger, #MEAction Global Community and Campaigns Director

#MEAction’s Director of Campaigns, Ben HsuBorger, catches up on work between meetings during last year’s Advocacy Day.

I am so glad I took part in the first #MEAction & SMCI ME/CFS Advocacy Week 2017. Advocacy for people with ME is my day job, but I learned so much from experienced advocates about how to most effectively engage elected officials.

I also got to meet so many other people for whom this was their first foray into advocacy, and I’ve watched over the past 2 years as those same people have gone on to become local leaders and mentors for others. This is how we build a grassroots movement for change together! I can’t recommend the experience highly enough to anyone who wants to take their take their advocacy to the next level.

Register for Advocacy Day 2019

What your visit will look like

Base camp where advocates can rest between meetings.

Attending Advocacy Day in Washington, DC will be filled with trainings, meetings and plenty of break time. Here is a description of what your days will look like during Advocacy Week in Washington, DC:

On Tuesday, morning, SMCI will host a roundtable titled EmpowerME. After the roundtable, there will be a break for lunch when attendees can go back to their hotel rooms, grab lunch near the hotel, or mingle with others.

In the afternoon, there will be an Advocacy Day training. The training will provide you with all the tips and tools to be an effective advocate the next day. You will learn how to tell your story effectively, how to make direct asks from your members of congress, plus practice what a meeting will actually be like. You will leave the training prepared to take on the next day!

After an evening break, there will be a reception so everyone can get to know one another. There will be some appetizers and a cash bar. It will be a time enjoyed by many.

Please note that all of Tuesday is voluntary and come-and-go. Feel free to attend what you please and leave if needed. If you are traveling or unable to make the full day, we will be hosting online trainings in a few weeks, so you can prepare by watching those trainings. Also, Tuesday’s activities will all take place at the Marriott Bethesda hotel (the host hotel for the week).

Then on Wednesday, we will head to the Hill. Depending on people’s schedules, we will have buses running throughout in the morning to take people to the Congressional buildings. We will have a room dedicated to ME/CFS Advocacy Day attendees, and, in the morning, you will be able to grab breakfast and hear a little pep talk to begin your day.

During the day, depending on your capacity, you can expect to participate in 3 to 8 meetings. You will receive your meeting schedule on either the Monday or Tuesday of that week. Plus, you will receive a map to help locate offices and office buildings.

Most importantly, to help you with your meetings, you will receive a folder with the information needed for each meeting. Also, you will be placed in a team with at least one other person, including an experienced advocate, so if this is your first time attending, you will have others there to support you. Your meetings will usually last between 15-30 minutes.

Throughout the day, you can always return to Base Camp for refreshments and to take a break. There will be space to lie down, as well.  Capitol Hill is huge; it consists of four congressional office buildings and the Capitol building. Your meetings may be in different buildings so you may be moving from one office building to the next. This is why we recommend good walking shoes. And all of the congressional office buildings are ADA accessible, if you will be using a wheelchair or mobile device.

After our day of meetings, there will be a reception in the Base Camp with refreshments and speakers. If you are able to attend, we would love to have you there. Otherwise, you are free to return to the hotel or your home. And as your evening comes to an end, you will know that you have accomplished something amazing that day: you advocacted on behalf of yourself and millions of others across the country. You worked to make the world a better place for people with ME!

Register for Advocacy Day 2019

Join from Home!

We know that not everyone is, understandably, able to travel to advocacy week in person. There will be many ways to get involved and to take action, such as making phone calls, social media posts, and local district meetings. Information about these actions, will be be coming soon!

To learn more about Advocacy Week and Day, be sure to check out our website for more information and a general FAQ of the week.

Support our Work!


4 thoughts on “Advocate for ME on the Hill! Only One Week left to Register!”

  1. Hi MEAction. When I tried to share this post in a Facebook Group, it won’t let me do it. Choose “Share in a Group” and it does not allow for you to enter which group. Can you help?

  2. I am so extremely grateful to every single person who has attended and will be attending ME on the Hill. I am not able to attend due to finances. But I remain hopeful that next year I will be able to attend. Thank you to all who have spent countless hours organizing this most important event💙

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