Emilie Sutterlin's Testimony to the Chronic Fatigue Syndrome Coordinating Committee (CFSCC) Washington, DC April 29, 1998

I suffer from Chronic Fatigue Syndrome (CFS, CFIDS, or ME), Fibromyalgia (FM), Neurally Mediated Hypotension (NMH), MCS, and Allergies. CFS is a hard disease to explain. It doesn't have much of a diagnosis process. If you have had eight or more symptoms out of a list of symptoms, for more than six months, and tons of your other tests have come out negative. Fibromyalgia is an illness that causes aching muscles and joints. I scream whenever someone tries to massage me. Sometimes, I have little depression setbacks and feel totally discouraged. I am allergic to MANY things. I have a very strict diet. I also have many symptoms of Attention Deficit Disorder (ADD). If you would like to learn more about any of these illnesses, you can go to:

CFS information [Other links were mentioned that are now broken.]

Recently, I have been feeling much better. I have been able to play some of my baseball games, and go to at least some of school about 4 days a week.

At Temple University, they did some research and found some neat patterns with the RNase-L enzyme and people with CFS patients. To find more about it, go to: http://www.cfs-news.org/dr-bob.htm. I found it very interesting, and a little confusing. The CFSICC committee says rightfully that they must be cautious and don't want to jump to conclusions. Another interesting report about CFS are at the Chronic Neuroimmune Diseases Information Collection.


This is what I testified at the last CFSICC meeting, 10/22/97:

Hi, I'm Emilie. Today I come as a freshman at Thomas Jefferson High School for Science and Technology, a competitive public magnet school in Fairfax County, Virginia. I am a fifteen year old with chronic fatigue syndrome. Yesterday morning I missed getting my blood tests to go to a two-hour meeting at school to discuss my P.E. How can I satisfy my doctor, who wants me to limit my physical and stressful activities, the State's compulsory p.e. requirement, and my own need to use what energy I have for academic classes? We had thought I was going to be able to do my alternative p.e. activities outside of school hours, but we are still having problems working it out.

I told the school that I would not be in my eighth period today, one of my two chances a week to try to make up tests, since I would be coming here to testify. When My mother learned about this meeting , she didn't plan for me to come, even though I had wanted to come again after speaking to you last spring. She knows that I am stressed about not being able to keep up with all of my school work as it is. However, I told her, "this advocacy is important too". I like for her to help me with problems at school, but I am the one who is going to have to live my whole life. I want this disease to have a cure. I want the Federal government to spend enough effort on research to find out what causes CFS and how to treat it.

Also, the committee should have somebody from the Department of Education to be on it to help them get information to schools. This Committee is starting to do a little bit better in letting doctors learn about CFS on the government web sites and with that teleconference. But there are many doctors out there who still don't understand all of the cognitive and physical problems that go along with this disease, or who don't realize the unpredictability of remissions and relapses. But there are even fewer school personnel who really understand CFS. They may have heard of it, but many of them think, "Oh, it is hard for me to get up in the morning, too," or, thinking that they know better, ask me to do things contrary to my doctors' or my parents' judgment of what I need for my health.

No one is getting the word out systematically to school administrators, teachers, and school clinics about CFS. I talked last spring about physician education and am not going to repeat those comments. But after paying for doctors' visits and bringing along photocopies and references to teach my psychologists and endocrinologist about CFS, am I also now supposed to educate all of Area II of Fairfax County and the State of Virginia about this disease? Couldn't this Committee, maybe working with the Dept. of Education, begin to get the word out to schools? I wish that I didn't have to spend so much time and effort trying to explain to my teachers and school about my CFS. I'd rather use my limited physical energy and short window of mental concentration on schoolwork. It is not that I don't want to share, it is just that it is a lot of time and mental effort, and that means I can't spend as much time on my job of trying to learn. I really love learning, especially science and technology. I 'm eager to work hard , or why else would I have bothered to apply to this challenging school? When I ask for an alternative or reduced p.e. schedule, ask to postpone a test, or turn in homework late, It is not to try to get out of anything. I would Love to be able to stay up past 7:30 p.m. working on homework and still be able to wake up for school by 8:30 the next day. Unfortunately, my body knows that 99 out of 100 times, that just can't happen. On nights when I have insomnia, I can try relaxation, I can try doing homework as long as I'm awake, but I can't force myself back to sleep and then make it up for school the next morning. I would love to get rid of all episodes of what we call "Brain fog" --then study those vocabulary words that I know will come in handy not only for my Odyssey test, but also for the SAT in a few years. I wish the Fibromyalgia pain would subside at least long enough for me to do the technical drawings for my Engineering class so I could catch up. But instead,

I concentrate now on what I can do and save the rest.

If the CFS Coordinating Committee could help me and hundreds of other students across the country, one way would be to have the Dept. of Education or DHHS somehow teach all schools about the complexity of CFS so that we could get more help with appropriate individualized accommodations, part-time or full-schedule home tutoring as needed, reduced and/or very flexible scheduling, and better planning and compliance with IEPs and 504 plans. I've had a 504 plan for two years. It wasn't fully complied with for even two weeks, and still is not being totally carried out. They try, but no one has time to monitor and to support all the teachers enough to make them remember their part of the agreement. I'm doing all that I can. Many times, I'm doing more than I can. Then I get worse for a while. I've given up almost everything for CFS and FM, but I won't give up my right to have a good education. It is critical to my future.

I've enclosed a document from Ms. Jane Colby, from the British group dealing with ME, their name for CFS. She is a former head teacher in a British School for nine years, and on the British National ME Task Force Focus Group on Children,. I received permission to quote from her research, which found that this illness is " the biggest cause of long-term sickness absence" in British schools. She urges these rights in the Action for ME Children's Charter. I'll read a few.

Action for ME * Children's Charter by Jane Colby

"A child cannot be divided into convenient pieces, each to be
administered by a different profession in isolation from the others."

Young persons under age 18 have:

I want the right to be taught and to study the best subjects, and the right to be taught in a school with a good understanding of my illness, Chronic Fatigue Syndrome. This illness is Chronic, and affects victims of all ages. As any other student in the U.S., those of us with CFS want the right to the best education possible to become productive members of society. But I must also consider my health, and ask that the DHHS extend Public Health education efforts to work with schools nation-wide to be on the lookout for other children or even employees who may or may not yet be diagnosed, and who may not have ever heard of their rights under the Rehabilitation Act or the Individuals with Disabilities Education Act. We youth and Families of Youth with CFS shouldn't have to be doing all of the teaching.

Last year, I handed out hundreds blue ribbons for CFS at my school on CFIDS Awareness day. I went lobbying at Capitol Hill and Testified to the (HHS, CDC) CFSCC group. The entire week was successful in letting more people know about the disease and how they can help.

Here is the letter I wrote to the CFS Coordinating Committee on 29 May 1997:

My name is Emilie Sutterlin. I am 14 years old, and in Eighth grade at Robert Frost Middle School in Fairfax, VA. I have had CFS (CFIDS) symptoms for at least 5 years, but was diagnosed with CFS only two years ago. I also have Fibromyalgia and many allergies. Having CFS has affected me tremendously in my school, sports, and social life.

May 12th was CFS awareness day. Throughout the weekend prior to this date, I handed out ribbons, and worked to teach people a little about my illness. Very few of the kids at school recognized the illness, and if so, they usually did as, "The disease Emilie Sutterlin has." Even fewer knew much about the symptoms or what the disease really is. Many were interested in learning about it. At church, a few people came up to me thanking me for informing them more about what I have. Throughout the entire week, quite a few people, five or six, came up to me or my mom, wanting more information because they either knew someone who had it, or they thought might have it, or thought they might have it.

Being a teenager is not easy. Having CFS is not easy either. Well, just try to imagine a combo deal. As a teenager right now, CFS restricts me from many activities, including sports, school, friends, Girl Scouts, church, youth group, music, or drama.

Many schools don't recognize CFS as an illness, especially as an illness in children. They need to be notified and educated about the disease. Both mental and physical aspects of CFS have majorly affected me in CFS. Many days, I have been too sick to go to school. Many days, I have been to sick to do my school work. And many days, I have been to sick to do either. Every time I've started to catch up with school work, more is always coming in. That can be discouraging.

Last year, I was out of school most of the time since October. My teachers sent me work, and I worked at home as much as possible. This school year has been much better. I have not gone to school at all for only 34 days. But, the rest are definitely not full days of school. I've gone for 1 - 5 periods about 100 days. I don't know if I'll be able to do a full day's schedule at Thomas Jefferson High School for Science and Technology, the competitive Magnet high school which I will be attending in ninth grade. We didn't ask for a homebound teacher, even though Fairfax County would allow one. They require the tutor to come during the school day 2 or 3 times a week, for four hours at a time, and a parent must be present. First of all, I never know when I am going to be awake and thinking. Also, if one of my parents must be present, thy could probably help me just as well. My Doctor advises me not to do PE in school because doing to much physical exercise could cause a relapse in my health. Since he knows how much I love baseball and realizes I need some exercise, he lets me play on my baseball team as long as I rest as soon as I don't feel good, or my blood pressure goes down or temperature or pulse goes up.

School seems to be much harder than it used to be. I have always been a good student. I am still an A & B student, but is much harder to keep up and to do the work. Math has always been one of my favorite subjects, and used to be very easy. One time my brain felt mixed up, and I couldn't remember even 10 X 10. At times, I think I'm doing an easy problem right, so I don't realize my brain is messing me up. Not knowing whether I can count on my brain made doing homework or tests is very stressful. Many times, I could tell how to solve the problem out loud, but I couldn't copy the numbers right or control my handwriting to or do the simple math to get the answer right. It is so hard to find a time when my mind is back to its usual self that I am about four weeks behind in that subject.

It is really hard when the teachers don't understand my needs or question my actions. A couple times, my math teacher said I couldn't use a calculator to check my work on my test, but my guidance counselor let me anyway, since that is part of my school 504 plan. A 504 plan is an accommodating plan for people with chronic disabilities that affect their performance in school.

The teachers try to understand, but they can't. Last year, when I was behind at school, I went to a school dance to have fun with my friends. At the time I was on a strong medicine, which I had just started. When I came home, I broke out in a horrible allergy reaction to the medicine. I was able to make it to some of school the next day. One of my teachers said I had to make up a test then if I had been up to doing extra activities the previous day. I did not do well on that test. They don't understand my needs as a student, a person with CFS, and as a teenager all together.

Most of the kids at school don't have any idea of why I am out most of the time. Last year, they actually thought I might have AIDS or something like that. They ask me why I need a wheelchair. I have a hard time explaining that sometimes I can run and play a baseball game, but at other times, I can't walk far distances without collapsing. They don't realize that after I participate in an activity such as baseball, or even sometimes just walking around, I have a relapse in my health pattern, a mini crash. I like to talk on the phone, but sometimes I'm too sick and it takes too much energy to call people on the phone, much less talk at all. But I do miss seeing my friends quite a bit, especially last year when I didn't get to school much at all.

I love to be invited to parties and social activities, even if I have to decline. It is extremely hard for me to make commitments, because I don't know from day to day, hour to hour, how I will feel. I am not allowed to go to sleep over parties because I need at least 10-12 hours of sleep each night. But often even after 15 or 16 hours of sleep I wake up feeling very tired and with a very sore throat. My parents have been very supportive on having me work on keeping up my social life. They let me have time with my friends when I'm up to it, even though I might not be caught up in my homework. They understand that at times, I just need to keep in touch and keep my spirits up.

A rather minor way that CFS indirectly takes out of my life is by having me go to many doctors appointments. I have at the very least two doctor appointments every week. I've had so many appointments, because I've also been diagnosed with many food and other allergies. Even though I have been feeling better, it still makes me very irritable if my mom tries to schedule two things in one day, like getting allergy shots and going to the orthodontist, or going into school to take a test and then doing something on the way home. I can't usually do that much in one day. I get wiped out.

I have gone to several different types of doctors (including one infection specialist, three other allergists, a heart doctor, and a sleep doctor) to try to figure out what was and is wrong. Many doctors don't know anything about CFS. Of those who do, most of them don't know enough or even know incorrectly. The doctors need to be educated about this disease and they need to be told what information that has been said is wrong, or not fully true. At one point, CDC gave out information saying CFS was only an illness affecting adults, not children and adolescents. Doctors and schools have read this information and believed it, not seeing or paying attention to contradicting papers which tell the truth. Luckily, support groups have been sponsoring speakers such as Dr. Clauw and Dr. Teitlebaum to speak about the illness. This is obviously not enough, though.

My regular family doctor didn't know very much about CFS at first, but he is open minded and kind. He kept trying to find different doctors who could help us figure out what I had. He believed me when I told him about my problems, and tries ideas to help encourage me. He always tries to help, and he reads and studies to learn more about new ideas in medicine all the time. He didn't know much about the disease until my parents and I began to teach him and he began to search for information on it, and he's still definitely not an expert.

My doctor has a medical student, Mark Greenwood, who decided to follow me and my medical health for two or three years. I am very pleased that he is here today to learn more about the disease. I am counting on him to educate his teacher and fellow students about my illness. I say this because my cousin, who is attending a medical school told me that she got only two sentences on CFS, saying basically there is no way to treat it, and it is hard to diagnose.

I went to one doctor who has had many CFS patients, and is supposedly a CFS specialist. He seemed to not really care about my feelings or questions, just what he wants to know. The people there didn't realize I was to see him for CFS and not allergies. Both the doctor and his nurses seemed insensitive, uncaring, and clueless, to say the least. He directed his questions toward my mother only. He only asked me to try a few exercises which he wanted me t do 5 - 15 minutes worth each day. I said I was in too much pain and weakness to do any of it, for I was in agony then. His reply was absurd: If it hurts don't do it. You should do at least 5 minutes of these exercises each day. Maybe, he didn't realize that I am extremely good at taking pain, and therefore, don't complain about or show it, even though I hurt. I made faces he couldn't see when he pulled a lot of wax out of my ear. If I had been a few years younger, I would have probably cried, screamed, and kicked him, my ears hurt so much. My side was bothering me throughout the visit, but I managed to pull out the painful exercises he insisted me on doing. Anyway, he didn't seem concerned about the questions my mother and I had come up with before the visit, even though he "answered" them, which he really didn't do to well. He was totally against my idea of getting a wheelchair to help me on days I was mentally up to , but not physically up to going to school. Yet, on my second visit,, when I came in my semi - new wheel chair, he said he was glad to see that I got a wheelchair to help me get around when I wasn't up to it. That was weird. His whole office was weird. My first visit consisted approximately 1 1/2 hours of waiting, during which I grew tired and hungry. I had no food with me. The appointment time was for about 1 o'clock, and I didn't get out of the building until 6:30. Basically, it took out about 8 hours of my day for one doctors appointment which was lousy.

One doctor, I visited, had personal experience with CFS. He had been diagnosed with it, but was then undiagnosed and re - diagnosed with some rare virus, and he was treated and got better. He, according to my current psychotherapist, misdiagnosed me with major depression. My current psychotherapist says she sees no signs of depression in me. Whether or not I have depression, this doctor gave me an adult test at the age of thirteen. Many of the questions I had a hard time interpreting the meaning.

All the psychotherapists I have been to, I have had to teach about CFS. Some of them knew nothing about it, some of them knew a little about it, but I gave lots of new information to all of them. I shouldn't have to pay people to let them know about CFS. The CDC, NIH and other programs who should publicize health information should do that. Then, I can talk about my specifics with them, and the problems it gives me personally.

I hope something can be done to improve the life of other children with CFS and mine, and so more people, especially doctors, will understand what this disease is really like. I am glad that I had a chance to share my thoughts with you and hope they mean something to you. Basically, we need more education toward schools and doctors, and maybe even other students, and more research to find a cause or a cure. Research in the children and adolescent areas have been held off because of lack of money and lack of school cooperation. Nevertheless, it is needed. We have it too.

Many of this writing was included on my speech to them on the same day.

On April, 19, 1996, I gave a testimony about my illness to many doctors. Here are the main parts of this letter I also wrote to them:

My name is Emilie Sutterlin. I am 13 years old, and in seventh grade. I have had CFS (CFIDS) symptoms for at least 4 years, but was diagnosed with CFS only one year ago. I have had many symptoms including tiredness, weakness, sore throat and swollen lymph nodes, headaches, low grade fever, palpitations of my chest, left arm, and hand, rapid pulse, and cognitive problems. Sometimes, but not usually, I am so weak that I can't raise my arms above my chest. Almost all the doctors I've been to have treated me well. My family doctor sent me to at least one infection specialist, two other allergists, a heart doctor, and a sleep doctor to try to figure out what was wrong. I had lots of blood tests and a sleep study. Once we started lots of doctor visits, it took about a year to learn I had CFS. I am currently going to one doctor who has many CFS patients. He seems to not really care about my feelings or questions, just what he wants to know, although my last appointment was a little better. My regular family doctor didn't know very much about CFS at first, but he is very nice. He kept trying to find different doctors who could help us figure out what I had. He believed me when I told him about my problems, and tries ideas to help encourage me. He always tries to help, and he reads and studies to learn more about new ideas in medicine all the time. But he doesn't know how to cure me either.

School seems to be much harder than it used to be. I have always been a good student , and especially liked math, science, p.e., and drama. I went to a magnet school for two years, then returned to my own school for 6th grade, where I got a Principal's award. I am still an A & B student, but is much harder to keep up and to do the work. I spend all my energy on school, and haven't been able to do other activities, like Girl Scouts, extra church activities, music, and drama like I used to do.

Last year I didn't have as many problems with my health; although sometimes it was hard to run or to read; most times it was not. This year has been much harder. Since then I have had many more problems with weakness, dizziness, cognitive problems, low blood pressure, headaches, and low-grade fever. My teachers send me work twice a week and I work whenever I am able. My parents and I didn't ask for a homebound teacher, even though Fairfax County would allow one. They come during the school day 2 or 3 times a week, and I never know when I am going to wake up (morning or afternoon), or how I'm going to feel the next day. Every time I've started to catch up with school work, more is always coming in. That can be discouraging, because I always do my work as soon as I get it unless I am too sick. If I am well enough and have the assignments, I try to go ahead, so I won't be as far behind when I am sicker.

My teachers are usually helpful. Math has always been one of my favorite subjects, and used to be very easy. One time my brain felt mixed up, and I couldn't remember even 10 X 10. My mother would call from work to check on me, and she could tell how I was feeling by asking me 9 X 7, or 7 X 8. If I had to stop and think, I obviously wasn't able to do my homework confidently. Not knowing whether I could count on my brain made doing homework or math tests very stressful. Some days I could understand the Pre-Algebra ideas, and tell my mom out loud how to solve the problems, but I couldn't copy the numbers right or control my handwriting to fit the work in the spaces on a worksheet or do the simple multiplication I needed to get the answer right. A couple times, though, my math teacher said I couldn't use a calculator to check my work on my test, but my guidance counselor let me anyway, since that is part of my school [504] plan. The teachers try to understand, but most of the kids at school don't have any idea of why I am out most of the time, or why someday I need a wheelchair. Sometimes I get tired if I walk about 20 feet or if I have to carry even light things. A few days I am able to walk a lot, or like now, am able to start trying to play softball again.

When I meet someone who doesn't know what CFS is, it is a little hard to explain it to them. I wonder if there are kids who have CFS who don't know it, and have a harder time in school because they didn't already have good homework habits before they got so sick, or whose parents or doctors don't let them rest when they really need it, because they don't know it is CFS that the kid has when the tests look normal, like mine usually do. Even some doctors don't seem to know CFS either.

People at school or church don't understand that having to do one thing in one day can use up all my energy. That is usually what happens to me. It takes too much energy to call people on the phone, but I miss seeing my friends. I need at least 10-12 hours of sleep each night, but often even after 15 or 16 hours of sleep I wake up feeling very tired and with a very sore throat.

Also, I have to go to different doctors' appointments. I got shingles on top of my CFS, and it took two months to figure out what it was, because I had a lot of pain near my spleen and side, but it didn't break out . Then three different times I got sores in my scalp, but we only figured out the third time that it was probably the shingles there too. I had been allergic to other medicines before, like penicillin and sulfa drugs. But I was allergic to at least three new medicines that I tried in the fall to help with my problems - Ultram, Florinef, and Zovirax. The itching and rashes were almost as bad as the pain and my CFS- problems.

Since December I've had even more doctor's appointments, since I've been diagnosed with many food and other allergies. We started going to the CFS specialists, but he didn't give us any ideas except to stretch, which I couldn't do yet. I was still taking two big Motrim a day and it hurt a lot sometimes even to touch my side, and more to try to stretch it at all. In February I was able to go to school for the last week for 3 or 4 periods for all 5 days, but since then in March I only made 1 or 2 partial days each week. I had bronchitis twice in March, but have been doing much better the last two weeks. Even though I have been feeling better, it still makes me very irritable if my mom tries to schedule two things in one day, like getting allergy shots and going to the orthodontist, or going into school to take a test and then doing something on the way home. I can't usually do that much in one day.

It would be nice to know how long this is going to last, and if I will be able to play select softball again this year. My mom couldn't believe I was able to play first base on March 31st, because two weeks before I hadn't been able to walk half way around the block without being too exhausted. I still hadn't run at all. I went to P.E. for the first time today in six months! I hope this feeling better lasts, because I want to be better again to be one of the two main catchers for my team, like I was last summer.

Something else is very important to me. I want my mind to be better enough to do well in high school. The science and technology magnet high school is where I always wanted to go. Now, I don't know if I'll be able to think clearly enough to take the entrance test when they give it, or if I would be able to do a full day's schedule if I make it in. I want to go to college, but when I had to do a career unit for English this year, I didn't know how to answer the questions. To be a professional catcher in major league baseball didn't seem at all likely because of CFS, but how should I answer the questions of how scientific or challenging a job I want? I'd also like to be an inventor or an engineer or a science writer, but I don't know if I should try to count on my mind or my body letting me be whatever I want to be, the way I thought I would be able to.

I was delighted when I heard of this April CFSICC meeting about kids with CFIDS. I think this is an important issued needed to be discussed. I hope something can be done to improve the life of other children with CFS and mine, and so more people, especially doctors, will understand what this disease is really like.