Emilie Sutterlin Speaks Out for YPWCs Who Can't

By Jenn Waterman

Originally published in Youth Allied By CFIDS, Fall 1997

CFIDS advocacy, school and baseball are the major things in 15-year-old Emilie Ruth Sutterlin's life these days. Her hometown of Annandale, Va. is just outside the nation's capitol, which makes it convenient for her to participate in federal CFIDS meetings and lobby days. Here's what she told fellow young person with CFIDS (YPWC) Jenn Waterman about herself and her life.

Jenn: How long have you had CFIDS?

Emilie: Five to six years, with a gradual onset, but my first big "crash" came in Oct. 1995, in 7th grade.

Is there any truth to this rumor that you're a baseball player?

Yes. If you want my autograph, just write, but no Yankees fans please - I'm a Baltimore Orioles fan! Last year I got to go to the Baseball Hall of Fame Game and Induction Ceremony.

I am a lefty first baseman, former catcher (because of CFS) and occasional second baseman in the Babe Ruth 14-15 year-olds' league. All the other players on my team are boys. My coaches have put me in right field, but I don't really like it there, and that is where I got a broken nose.

I love playing, watching and keeping score. But mostly, I love to play! I wish I had the blood pressure, stamina and concentration to be a catcher again. This fall I wasn't up to playing as much as last spring, and I'm even having trouble doing my brief stretching and conditioning program regularly.

The Chronic Fatigue Syndrome Coordinating Committee is part of the U.S. Dept. of Health and Human Services (HHS), an Executive Branch cabinet-level department headed by Secretary Donna Shalala.

These meetings are for the federal agencies who are involved with CFS (such as the National Institutes of Health [NIH], Centers for Disease Control [CDC], Food and Drug Administration [FDA], Social Security Administration [SSA] and Health Resources Services Administration [HRSA]) to share what they are doing about CFS research and problems, and to hear public concerns and research findings about the illness.

Representatives of these agencies and the general public, including some physicians and leaders of national organizations, are on the committee. Dr. Brian Mahy from the CDC is the moderator. Ms. Kimberly Kenney of The CFIDS Association is also on the committee.

Public testimony is permitted only during the last hour of the meetings. Mr. Tom Hennessey, Mr. Roger Burns and Ms. Mary Schweitzer testified both last May and this October. They all represented national groups of adults with CFS. I was the youngest person to speak at both meetings, although an older youth, Rebecca Moore, also spoke at the one last May.

I had also testified at a CFS Interagency Coordinating Committee meeting in April 1996. The public testimony at that meeting was mostly about pediatric CFIDS. I was nervous at first, but once I started speaking, I relaxed, and afterwards I was very glad I had done it. I also was excited to meet some other YPWCs whom I had only known by e-mail before.

If everybody thought someone else would speak for them, no one would speak at all. Also, some YPWCs who wish to testify can't because they can't travel or they're homebound. So, when I'm doing somewhat better, I do my best to represent my times of trouble to these people so they can understand the disease better. They need to meet real patients with CFS and hear their personal stories to know how badly this disease affects our lives.

How much representation is there for young persons with CFIDS?

I have been the youngest person to speak each time. At the October meeting, there was a man in his mid-20s, John Ginsberg, who used to work for Outward Bound. He spoke very emotionally and really made his points well. But there was no one in the room besides me younger than him.

I wish some more of you could come with me to the meetings and speak or watch. The next one will be next April or May (1998), and the day before they'll have a special workshop on pediatric CFIDS.

The last two meetings have been in a very large conference room of a big office building at the foot of Capitol Hill. The only interesting thing about the place is the big, red modern art sculpture in front of the building. You go through a security gate like at an airport and you have to sign in.

There is a limit of about 100 people that are allowed in the room so you are supposed to call ahead, but there were only about 40-50 people at each of the meetings. The place is quiet, and yet it's hard to hear the testimony sometimes. They use an overhead projector if people want, and it reminded me of a high school classroom when one speaker was trying to explain in easier language what the Temple University research was about and showing charts so everyone could see.

Nobody minds if you just stretch out with pillows and a blanket on the floor, or if you turn chairs around and put your feet up as you listen. In some ways it is very formal as you make your presentation, but then it feels very informal because even the important heads of agencies spoke to me nicely afterwards and no one looked at me funny when I stretched out flat on the floor in the back of the room. Also, you can bring in your water bottle without any problem, although I did eat most of my Fritos in the hallway, then snuck only a few more in the conference room.

How much school did you miss to testify? What do your teachers think of your being there? Have you told your classmates about your experiences in Washington? What do they think about it?

The first year (1996), my teachers and several friends knew and were proud of me. My school literary magazine even published my testimony, so lots of kids found out about CFS.

Last spring when I testified, I missed a half a day of school, or maybe a whole day, I don't remember. But my civics teacher thought it was great, and my friends were impressed and helped me pass out ribbons for CFIDS Awareness Day at school.

This year was different. I'm a freshman at Thomas Jefferson High School for Science and Technology, and most of my new friends don't know that I spoke to the Committee. Most of them have an idea something is wrong, since I had to use the wheelchair once, and have missed some classes for about 30 days out of 45 so far, according to the school's records. But I haven't told many people at my new school except my teachers that I have CFS.

This time I left school before the "activity period" at the end of the day so my Dad could drive me straight downtown and drop me off at the door, 25 minutes from my school. Although I told my school ahead of time that I was going, I don't really think they were even listening to me, since they didn't make any comments before or after. When the school started giving me trouble for missing so many classes, my doctor said kindly, "Don't they know they have a celebrity here?"

It is hard to tell new people about CFS. It's hard to explain that the illness is so unpredictable that I can't plan ahead on group projects or sign up for activities that I desperately want to do. Sometimes I have to miss out on exciting chances like math or computer team meetings or homecoming float building, etc., because I have to make up tests, or can't walk the block or two to the place where they work on the floats, or have too much work to catch up on before early bedtime.

They always have a topic - like pediatric CFS in 1996 and physician education and pediatric CFS last spring. The first time I spoke, it took about three weeks, and at least 17-21 hours of writing and rewriting and revising and practicing. The second time, I used that presentation as a starting point and added some new material, rewrote it and edited it some more for about three hours the night before, then spent about an hour rewriting it one more time during the committee meeting.

I particularly wanted to talk about physician education, since my doctor has a medical student following me as his case study for three years. In fact, Mark Greenwood, the George Washington University med student, came all the way downtown to hear me speak.

What did you speak about at the most recent meeting?

This year I thought of a suggestion on my own, the idea that the Department of Education should be represented on the CFSCC in order to help get the word out about CFS, since part of the Committee's job should be publicizing and informing the public about the illness.

So even though it wasn't exactly on the agenda, I talked about that under the idea of pediatric CFS, since each time I speak I mention the concern about dealing with schools and getting diagnosed. This year my mom helped with the draft, because I was actually doing tons of school work. She wrote using the ideas I told her, and then I made changes and edited it for about two hours total.

Are you nervous before you speak? If so, what do you do to settle your nerves?

I was most nervous the first time. So many people came up and complimented me after the first time I spoke that I was very brave the next two times. I just make sure that I'm dressed decently, actually take a shower (those of us with CFS know that is a major accomplishment) and try to get there early enough to hear some other people speak first, so I don't feel rushed. Also, I try to make it seem that I'm explaining the illness to someone in more casual tones, so I won't get lost when I'm reading what I've prepared.

Have you ever been struck by brain fog while testifying and slipped up in what you're saying?

I've tried to follow my written speech with my finger so I won't lose my place. But when I lose my place anyway, I just pause for a second and look quickly. I'm pretty sure they understand that someone my age would get nervous talking to a government committee. In school I'm learning more about making presentations in a technology concepts class and hope to impress the Committee next spring with better speaking skills and visuals.

How long does it take you to testify?

They only give you five minutes. The first time I spoke longer. This last meeting they were very strict on the five-minute limit, cutting people off to say "Just one more sentence." But I noticed they didn't interrupt me at all, even though I went to six minutes. I think they didn't want to fluster me, and felt more afraid to upset me as a young person trying to do my best.

How do you feel afterwards (both physically and emotionally)?

I feel very proud but completely wiped out. Last time after I spoke, I went to the back of the room and lay down on the floor to rest.

Would you encourage other YPWCs to join you in Washington?

Definitely. Call now to reserve your floor space! At my house we have several extra sleeping bags, no-smoking accommodations and no charge.

You can earn extra credit for English, government or speech classes. But, more importantly, you represent more real patients with this disease. You can help educate the Committee about what problems we have that need to be solved, and persuade them to actually spend the Federal Government's money on research to find a cure for us soon.

What would you say to the YPWC who says, "You're already there representing kids with CFIDS. Why should I go?"

Everybody has different cases, symptoms and problems. They have seen my face three times. Maybe they'll think I'm the only person in the country under 25 with this disease. Plus, I'm not as bad off as many kids. If they only see me, they won't realize that, even though I will gladly take other kids' letters to share.

You can be more effective by showing your face. We could even share speaking time - 30 seconds each and not as much to prepare - to show how many people suffer and then give longer written testimonies to include in their official packet.

What have you personally gained from testifying before the CFSCC?

Exhaustion and a really good feeling about myself that I had accomplished something important for my future. My writing is now part of the official bureaucracy of the Federal Government. Sounds impressive, huh? I just hope they read it!

Lobby Day is fun, but it requires a whole lot more physical and mental energy. I learned a lot about how the government works during the training session. The CFIDS Association really taught us well, and I felt prepared and confident going as part of a team with adults to speak to Congressmen and their staff members. I even felt brave enough to go to my own Congressman's office alone when my scheduled lobbying meetings were over.

The Association gives you packets of information with lots of facts to give to the people you meet with. They also teach you points to discuss when you are trying to convince the Congressmen to vote for CFIDS research funding. They also give you a phone number to leave if people have more questions, so don't be scared off just because you may not have a good memory now. That is part of the whole point of why we need help!

Lobby Day is in May; please come and add on some sightseeing. Do that first, then rest a day, because after the lobbying, you are guaranteed to deserve some extra rest!!!