CYA Members Tell Researchers About Living With CFIDS

By Rebecca C. Moore

Originally published in Youth Allied By CFIDS, Spring 1996

Presentations from members of the public are always a highlight of the CFS ICC's annual Open Meeting, but this year's meeting was unique in that seven of the presentations were given by young persons with CFIDS (YPWCs) or their parents.

I was the first YPWC to speak. Focusing on the need for our nation's Public Health Service to work towards improving the medical care received by YPWCs (see the below for a list of my specific requests), I presented recommendations for how the government could learn more about CFIDS in children and adolescents. I asked the CFS ICC to form a special task force to study pediatric CFIDS and make sure that every effort is made to help our doctors and researchers learn more about it. One of my main requests was that the government begin working to answer questions about how common CFIDS is in young people and about whether we have the same abnormal test results as some researchers have found in adults with CFIDS.

Karen Lang, of West Sacramento, California, came to the CFS ICC meeting because her son, Calen, has CFIDS. As she spoke, Calen's robust and healthy-appearing image was projected onto a large screen behind her, in full view of every person in the room. Karen explained, "What you see in the slide is one of the biggest obstacles facing kids with CFS: for the most part, they don't look sick." She spoke about problems YPWCs have receiving a proper diagnosis, being denied access to medical treatment and persuading schools to accommodate their needs.

Her presentation stressed the effects that ignorance about CFIDS has had on her son and many other young patients, saying, "because of it, [Calen] faces entering adulthood inadequately educated, inadequately skilled, unemployable and unable to take care of himself. To have a disabling chronic illness as debilitating as CFS during childhood is bad enough, but to have a chronic illness that is not recognized or understood from the top level of government down to the local pediatricians, is worse."

Karen emphasized that there is no need for Calen and other YPWCs to face such a stark reality, and that, "with the right kind of help and planning from the system, he can gain the skills he needs for successful adult living. Children with CFS can set realistic goals in light of their disabilities and achieve them. They do not need to fail." She underscored that leadership at the CFS ICC's level would be required for doctors, school personnel and other decision-makers to understand pediatric CFIDS and take it seriously.

Erin Bass, age 16, of Glastonbury, Connecticut, was too ill to attend the meeting, so her mother, Sara, read her testimony for her. Erin wrote about being too sick to attend school for over two years ("it's over 730 days, over 17,000 hours") and expressed the frustration felt by many YPWCs at not being able to have a normal life. "I've already lost most of my high school years and, although I still have my real friends, I've lost the ability to do things with them, like going to school, hanging out and just being a teenager. They have boyfriends, part-time jobs and lives; I have four walls, a TV and a medicine cabinet full of pills that haven't made me better. More than anything, I want to be a teenager again. I don't want your sympathy - I want my life back and a cure, and so do other kids with this illness."

After reading Erin's speech, Sara Bass, president of the Connecticut CFIDS Association, told of a 1995 workshop, organized by the Connecticut group and co-sponsored with the state's Departments of Education and Public Health, at which school nurses, special education staff, counselors, social workers and administrators learned about pediatric CFIDS. She spoke of the high number of youth with CFIDS living in her area, and pleaded with the committee to, "start taking this disease seriously."

Heather Frese, of Cambridge, Ohio, spoke eloquently on behalf of both herself and Sharon Walk, of Florham Park, New Jersey, who was too ill to join Heather at the meeting (see Sharon's Member Profile). Both Heather and Sharon are 21 years old and have been sick for 11 years. They recently learned of the death of one of their CFIDS/M.E. pen-pals from Australia, Allie Hunter (who had a serious case of M.E. but also developed both secondary illnesses and antibiotic-resistant infections), and decided to memorialize their friend by including quotes from her letters in their testimony.

Heather's presentation began with a focus on how difficult it was for her, Sharon and Allie to find compassionate medical care. "Our doctors knew that we were sick, but when no easy answers could be found, they covered their ignorance by blaming us, telling us we were crazy. Even after diagnosis we were poorly understood, forced to go to school when we belonged in bed, told that we had 'psychosocial issues,' were too depressed, too optimistic, in denial, chasing ethereal vapors, irrational and coping too well. Becoming ill at age 10 is a difficult enough concept to grasp. Compounded with years of disbelief, ignorance and ridicule by family, friends, doctors, teachers, media and government, it's a wonder that any of us survive."

Heather spoke of the difficulties she and Sharon have faced as young, long-term CFIDS sufferers, and of their dedication to not only fight to preserve their own fragile health, but also to induce change. She pleaded with the committee members, "We need your help! We need your research money. We need to find a cause, a credible name and we need a cure. Open your eyes! This is what is happening to us - to children around the world. No child should have to suffer like this. Now is the time. Do something."

Frank Albrecht, PhD, a Virginia clinical psychologist whose daughter, Sarah Barrows (age 13) has CFIDS and neurally mediated hypotension (NMH), spoke about several patients referred to him for treatment of depression. In one case, both a mother and daughter were thought to be suffering from treatment-resistant clinical depression. Months after treatment, the mother contacted him after being told that she might have CFIDS. Based upon the knowledge he'd gained since his daughter and another of his patients had gotten sick with CFIDS, Dr. Albrecht realized that the woman's daughter probably had CFIDS, too. In one of the most humorous moments of the afternoon, Dr. Albrecht said of this sudden realization, "whereupon the light dawned," at the same time he accidentally turned off the lights in the meeting room. This incident immediately sent everyone in the room into gales of laughter.

Catherine Matheny, age 22, of Midlothian, Virginia, spoke before the committee with a calmness which belied the sad reality she'd faced while growing up with CFIDS. She shared the story of the first time she recalled feeling "different" because of CFIDS: when she was dropped from her elementary school's safety patrol because of being absent too many days. Catherine said, "This was the first time I recall feeling punished for not feeling well. This would be the first time I recall being criticized by my friends for not being around. This was the first time I felt that I could not rely on my body, or on myself. I was trying my hardest, but it wasn't good enough. "

As time went by, Catherine said, "I just started accepting my limitations, never knowing that it wasn't normal. I thought that since no one could find anything wrong with me, that everyone must feel the way I did but could handle it better. I started believing those who said that it was all my fault, or all in my head, or that I wasn't trying hard enough."

When she was 15, Catherine became much worse and was no longer able to attend school. She was diagnosed with CFIDS at age 19. She said, "all the years of misunderstanding and guilt still hang over me. Knowing what is wrong with me helps, but all of the years I spent alone, and confused, and blamed for my problems are not that long gone. This year, I'm watching my childhood friends graduate from college, and I'm wondering if my time will come."

Emilie Sutterlin, a seventh grader from Annandale, Virginia, spoke to the committee about what it is like to be 13 and in her fourth year of CFIDS. "The symptoms vary and I never know from day to day or hour to hour what symptoms might give me trouble and when. The things that bother me the most are when I can't remember easy facts that I've already known for a long time, and when I'm not strong enough to walk or play softball." She said that most of the students in her school have never heard of CFIDS, and that, "they wonder if I have AIDS and when I'll get better. They can't understand why sometimes I come in for a test in a wheelchair, and why other times I can walk between classes." Emilie shared her dream of being a scientist, engineer or writer, but was concerned that, "right now, I have no idea what my future might be." She told the committee members that she hopes their research, "will help us figure out ways to treat CFS."

This year's CFS ICC public meeting not only highlighted our urgent need for better treatments and a cure for CFIDS, but finally brought to light the unique difficulties faced by young CFIDS patients. The youth who spoke now feel encouraged because someone finally listened to us. We will continue to advocate on behalf of ourselves and other CFIDS patients, and will be mindful of the influence that YPWCs can have on our nation's researchers when we work together.

What YPWCs Need

Rebecca Moore's requests of the CFS ICC included:

• A Pediatric CFIDS Task Force to draft and oversee a comprehensive strategy towards improving the medical care received by children and adolescents with CFIDS.
• A prevalence study designed and implemented with the symptom and onset patterns of pediatric CFIDS in mind. The inclusion of children and adolescents in the CDC's community-based prevalence study planned for Wichita.
• An expert panel to write and issue a pediatric CFIDS case definition.
• An increased emphasis on pediatric CFIDS in biomedical studies conducted or funded by the government.
• A Request for Applications issued by NIH for pediatric CFIDS research grants.
• The requirement that the two NIH-funded CFS Research Centers include children or adolescents with CFIDS in their biomedical studies, and that the NIH provide them funding to do so.