For
information contact:
Peg Walk
Betty
McConnell
Links:
Read report: What NJCFSA has done for Children with CFS.
The CFIDS Association of America has a link to their Youth Home page
NEWS FLASH:
PEDIATRIC CASE DEFINITION PUBLISHED!
A new case definition from the International Association for CFS/ME has been published in the Journal of CFS. Dr. Leonard Jason, the lead author, has kindly granted NJCFSA permission to post it on our website. Click here to download and print a copy.
An article discussing the new pediatric case
definition and authored by NJCFSA Trustees Dr. Ken Friedman and Dr. Rosemary
Underhill was recently published in The New Jersey Pediatrician (vol. 32, pp.
17-18). The New Jersey Chapter of the American Association of Pediatricians
e-mailed a copy to all their members and kindly gave NJCFSA permission to
publish it on the website:
The New
Jersey Pediatrician, Volume 32
In addition, Drs. Friedman and Underhill co-authored an article on Pediatric CFS directed at education professionals in the New Jersey Education Association's October 2007 edition of the NJEA Review. It is available here, reprinted with the kind permission of NJEA.
Ken Friedman gave a presentation on the new case
definition of Pediatric CFS to the New Jersey Division of Youth and Family
Service. He has given permission for a version to be posted:
The ABC's of CFS to DYFS
14 year old New Jersey boy (and NJCFSA
member) Brian Bernard's struggles with CFS
(reprinted with permission from the
CFIDS Association of America)
Brian's
Presentation at the NJCFSA Spring Conference in March 2007
(reprinted from the NJCFSA Newsletter)
When I was seven, I became ill. Before I was diagnosed, I had a high fever for over a month and during that time I went to several doctors and had lots of tests done. The doctors said they couldn’t find anything wrong with me. Finally they sent me to an infectious disease doctor and he diagnosed me with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia. Although I have some doctors that do not believe in it, I have others that are firm believers in it and try to help me.
Having CFIDS has changed my life in so many ways. It has been very hard
for me
to hang out with friends, to be a "normal" teenager or even just
to go to school. I used to feel left out. I just wanted to be like
the
other kids. I have to pick and choose what activities I will
participate in.
Over the last year, I have been in the hospital about 12 weeks. I was
picked on
because I was sick and I would miss school, go in late or have to
leave
early. I am able to go to school more often now because I
have
started a partial day schedule. That means that I go in
for some of
my classes, and have home instruction for some of them.
I rest
during my lunch period in the Nurse's office.
When I was younger, most of the kids I went to school with didn’t understand the amount of pain I was in or that if I did too much, I would be sick the next day. A simple thing like someone bumping into me in the hallway could really hurt. Now that I am in high school, people notice that I am not there for some of my classes even if they saw me earlier in the day or that I am often absent. I don’t get picked on as much because I am not with all the same kids in each class like when I was in grammar school. Although I have been very sick over the past few years I have been an "A" and "B" student. This school year has been the best school year I have had with my grades. A lot of that is due to understanding teachers that have followed my IEP and done their best to work around my illness. The nurses, my home instructor and Mr. K. are really amazing with helping me out in school. I also have some really great teachers for the classes for which I am able to attend.
A lot of people think that it is crazy that I know so much about my illnesses, but since it is my body I feel I should know what is going on with it. I am glad that I know so much about my illnesses. It helps me in many ways, such as knowing when I am in for a "crash".
Learning to live with this illness is very hard. You have to choose which things you will do because the next day you might not be able to do anything at all because you picked something that used too much of your energy. I enjoy dance and shopping. I have the most understanding dance teacher/ adopted big brother ever. I dance whenever I can but there are sometimes that I push my self to dance and then later I pay for it. I tell myself that this is one thing that is worth it . Some days I can act like the other kids and other days I can’t even get out of bed. Having CFIDS, I have learned how easily I can get sick with a cold, or a stomach bug. If some one is around me with a cold, I won't get the cold I’ll end up with pneumonia.
Having this illness has made me appreciate my “true friends” even more.
I have
2 friends that are also chronically ill. One has CFIDS like me and he
is very
special to me because he helped me to understand a lot of the things
that were
happening to me. He is like a big brother to me. He lives in
VA and I
don’t see him very often but he is always there for me and so is his
mom. My
other good friend is also chronically ill but has other things wrong
with her..
She comes to see me when she can. She knows what its like to have
the
other kids pick on you for being different and missing a lot of
school. I
have a few more close friends that try to understand but it is hard
when you
don't live with it.
Over the last several years, I have learned which friends are always there and always supportive and they mean the world to me. One of my best friends is always there to chat with on the phone or on the computer when I can't leave the house or am in the hospital. Her goal at times is just to get me to smile or laugh and she does a great job of it. Another person who means the world to me is the superintendent of my old school. He always found a way for me to take part in things. He always did just a little bit extra for me. He never stopped believing in me and is always there for me.
I always try to keep things positive and think about all the people who
care
about me and who have helped me, such as my dance teacher/ adopted big
brother
who has changed my life in more ways than he will ever know, other
adopted big
brother, and my friends. I try to help other people when I can. There
are some
very special people in my life…family members like my mo who is always
trying
to help me no matter what, close friends, my boyfriend, some of
my
teachers like my new home instructor who tries to make learning more
fun and
different having her as my teacher my grades have improved so
much, and the principal from my religious l
school. Each
one of these people holds a special place in my heart. They have all
helped me
in different ways and I hope they know that it means a lot to me.
They’ve all
helped to make having this illness just a little easier.
I
guess if I had to give someone some advice about having this illness, I
would
tell them to enjoy the "up" times and pick the things that mean the
most to you to do. Appreciate those around you that support you and let
them
know how much it means. Realize just how strong you are in learning to
deal
with this illness. Don't let this disease ever let you give up.
Believe
that one day there will be a cure. I like the following quote.
When I am older, I would like to be a special education teacher, a
writer, a
CFIDS researcher, or a speech pathologist .Two years ago, I became a
Bat
Mitzvah. My community service project was a fundraiser for the
NJCFSA. This year was my third year running a gift auction
for the
NJCFSA and I have now raised over $10,000 for this wonderful
organization.
Last year, I was honored to become a youth trustee on the NJCFSA Board.
- To Believe
To
believe
is to know that every day is a new beginning.
It is to trust that miracles
happen, and
dreams really do come true.
To believe is to see angels
dancing among
the clouds,
To know the wonder of a stardust
sky
and the wisdom of the man in the
moon.
To believe is to know the value
of a
nurturing heart,
The innocence of a child’s eyes
and the beauty of an aging hand,
for it is through their teachings
we learn
to love.
To believe is to find the strength
and courage that lies within us.
When it is time to pick up the
pieces and
begin again.
To believe is to know we are not
alone,
That life is a gift and this is
our time to
cherish it.
To believe is to know that
wonderful
surprises
are just waiting to happen,
And all our hopes and dreams are
within
reach.
If only we believe.
- Author Unknown
The CFIDS Chronicle article: Pediatric CFS,
PDF document viewed with reader from
Adobe
reprinted with kind permission of the CFIDS
Association of America
As one of the founding
members of NJCFSA, she was the only board member at the time who not
only had
CFS herself but was raising a child with the illness. Betty said “I
became an
advocate for my son Scott in 1987 so it was only natural that I would
become an
advocate for all children with CFS in New Jersey.
Betty is most proud of writing and
establishing the NJCFSA Scholarship. The $1,000 Scholarship
is awarded to graduating seniors with CFS in New Jersey who are
continuing
their education in a college or technical school. The
scholarship mailing to every high school in New Jersey has
become an outstanding awareness project in itself, but it is only one
part of
the NJCFSA’s varied programs for youth.
As part of her work on the committee,
Betty has been instrumental in targeting organizations and events that
can have
a significant impact on increasing awareness and understanding of CFS
in kids.
Betty was kind enough to grant this interview on the activities of the
youth
education committee.
The youth education committee is comprised of NJCFSA members who are advocates for children with CFS. Our main purpose is to offer support to parents and their CFS diagnosed child or adolescent and to provide them with educational materials on pediatric CFS. Our committee is also dedicated to increasing awareness of CFS in children and disseminating reliable information to schools, pediatricians and the general public on the seriousness of chronic fatigue syndrome in young people.
How does the NJCFSA Youth Education Committee help parents and children with CFS?
Our committee has put together a pediatric education package that contains numerous articles on pediatric CFS. The package includes a reading list of books on pediatric CFS, a resource list of websites and newsletters about CFS, a checklist for school nurses, medical journal articles on pediatric CFS and a collection of newspaper articles that have featured children and adolescents with CFS. We have also included many articles on coping skills for both parents and children. Additionally NJCFSA maintains a physician referral list.
What
programs have the Youth Education Committee participated in?
What
other activities does the Youth Education Committee participate in?
For CFS Awareness Day
2003, we mailed pediatric
education packages to Dr. William L. Librera, the Commissioner of
Education for
the state of New Jersey, to the Superintendent of Schools for each
County in
New Jersey, to the members of the New Jersey State Special Education
Advisory
Council and to the five catholic dioceses in New Jersey for its
schools. As a
result of this mailing, we received many inquires for speakers and
exhibitions.
What does the Youth Education Committee have planned for Awareness Day 2004?
Our main goal for 2004
is to educate the state’s
pediatricians. Utilizing the American Academy of Pediatrics New Jersey
chapter
website, we found the names and addresses of the Executive Council
Members, the
Counselors, Standing Committee Members, Advisory Committee Members and
the
Members of their Task Forces. Our intention is to assemble sixty
pediatric
education packages and send them to this select group. Our pediatric
education
package will include copies of A Consensus Manual for the Primary Care
and
Management of Chronic Fatigue Syndrome published by the New Jersey
Department
of Health and Senior Services, the Academy of Medicine of New Jersey
and the
University of Medicine and Dentistry of New Jersey. We hope that these
leading
pediatricians of New Jersey will share the information with their
colleagues.
Who
are the other members of the Youth Education Committee?
Committee member Peg
Walk has been an advocate for
pediatric CFS since 1990. Before becoming ill with CFS, Peg was a
computer
programmer with a masters degree in mathematics. Peg also taught
elementary
school math and computers. Peg’s interest in pediatric CFS came as a
result of
having a daughter with CFS. Peg’s daughter Sharon started the first
newsletter
and pen pal club for children with CFS in 1990. Peg helped her daughter
with
her newsletter and when the newsletter reached over 100 members they
contacted
the CFIDS Association of America (CAA) for help. The CAA took over this
newsletter and formed the CFIDS Association of America’s Youth
Alliance. Peg
has been the support group leader for Morris County for many years. She
has
manned our exhibit tables at conference and conventions. Peg can be
seen at
NJCFSA’s spring and fall conferences handing out articles on pediatric
CFS.
NJCFSA recently elected Peg to its board of trustees.
Committee member Jon Sterling has been an
advocate for children with CFS since 1992. As one of the founding
members of
NJCFSA and our first President, his interest with pediatric CFS was a
natural
consequence of his career as a school principal. Jon is a talented
speaker and
has given many lectures on behalf of children with CFS. Twice he
traveled to
Atlantic City to speak at the NJEA Convention. He recently exhibited at
the New
Jersey School Counselors Convention and gave a talk to teachers at a
school in
Passaic County, New Jersey. His understanding of the educational system
and the
accommodations necessary for an appropriate education for the CFS child
is
exceptional. Jon was a support group leader for Bergen County for
several
years, is Past President of NJCFSA, former Treasurer of NJCFSA and
serves on
the federal CFS advisory committee to the U.S. Secretary of Health and
is
Chairman of the Board of directors for the CFIDS Association of America.
What other NJCFSA members and organizations have helped our committee?
Other NJCFSA members
who have assisted our Youth
Education Committee with projects and exhibiting are Ted Nilson, Jackie
Niederle, Laura and Beth Warren, Stephanie Habermann, Teresa Johnson,
Sheila
Rosen, Janice Frank, James Glenn, Sharon Walk and Lorraine Steefel.
Our committee is also grateful to the
CFIDS Association of America for providing educational materials for
each
project. We also acknowledge the assistance of the Pediatric Network
website
founded by Rebecca Moore and Mary Robinson for the many educational
articles
they feature on their website. Their website is invaluable to children
with
CFS. (www.pediatricnetwork.org)
What
Doctors have helped the Youth Education Committee?
In 1999, Dr. James M.
Oleske, M.D., MPH, gave a
pediatric CFS education lecture to teachers and school nurses at the
New Jersey
Education Association’s annual convention in Atlantic City. Dr. Oleske
is
Francis-Xavier Bognoud Professor of Pediatrics, Department of
Pediatrics,
UMDNJ-New Jersey Medical School, Newark, N.J. Dr. Oleske is NJCFSA’s
medical
advisor and is an inspiration to all who work on behalf of children
with CFS in
New Jersey.
In 2002, Dr. Malcolm Schwartz gave an
excellent presentation on pediatric Chronic Fatigue Syndrome at the New
Jersey
Education Association’s annual convention in Atlantic City. His lecture
was
well received by the teachers and school nurses in attendance. Dr. Schwartz is Chief of Pediatric
Endocrinology at Monmouth Medical Center.
What is the most gratifying aspect of the work of the Youth Education Committee?
If all the exhibiting, education packages, scholarship program and speaking engagements make the lives of children with Chronic Fatigue Syndrome and their families easier, then we have accomplished our goal.