Emilie Sutterlin Speaks Out
for YPWCs Who
Originally published in Youth Allied
CFIDS, Fall 1997
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
Emilie: Five to six years, with a gradual
onset, but my first big "crash" came in Oct. 1995, in 7th
Is there any truth to this
rumor that you're
a baseball player?
Yes. If you want my autograph, just
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
(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
I love playing, watching and keeping
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.
You spoke at the Chronic Fatigue
Coordinating Committee (CFSCC) meeting in October. What is the purpose of the
CFSCC meetings and who is there?
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
These meetings are for the federal
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
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
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
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
Other people from all over
the country go to
these meetings to represent PWCs. Why was it important to you to be there?
If everybody thought someone else
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
How much representation is
there for young
persons with CFIDS?
I have been the youngest person to
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
What are the meetings like?
Is there a large
crowd? Is it very formal? How much noise and confusion is there? Is the
atmosphere accommodating to PWCs?
I wish some more of you could come
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
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
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
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
How much school did you miss
What do your teachers think of your being there? Have you told your classmates
about your experiences in Washington? What do they think about
The first year (1996), my teachers
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
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
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
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.
How long did it take you to
testimony and how on earth do you decide what you're going to speak
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
you speak about at the most recent meeting?
This year I thought of a suggestion
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
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.
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
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
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
How long does it take you to
They only give you five minutes. The
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
I feel very proud but completely wiped
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
Definitely. Call now to reserve your
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
What would you say to the YPWC
"You're already there representing kids with CFIDS. Why should I
Everybody has different cases, symptoms
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
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
testifying before the CFSCC?
Exhaustion and a really good feeling
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!
You went to Lobby Day last
May. What was
Lobby Day is fun, but it requires
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
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
Lobby Day is in May; please come and
some sightseeing. Do that first, then rest a day, because after the lobbying,
you are guaranteed to deserve some extra rest!!!