CYA Members Tell Researchers
About Living With
By Rebecca C.
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
I was the first YPWC to speak. Focusing
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
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.
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
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
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
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."
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
Heather's presentation began with a
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
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."
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.
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
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."
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
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.
Rebecca Moore's requests of the CFS
- 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