NJCFSA Youth Corner

for Children, Adolescents and Young Adults

For information contact:
Peg Walk
Betty McConnell

Links:

OFFER (Organization for Fatigue & Fibromyalgia Education & Research), has given us permission to post links to their website sharing two helpful resources for children/adolescents with CFS/ME and/or FM.  OFFER, the well known Utah-based CFS/ME and/or Fibromyalgia organization, can be contacted at:

1002 E. South Temple, Suite 408,
Salt Lake City, UT 84102
http://www.offerutah.org.

 A Kid’s Guide to Surviving and Succeeding in School with CFS & FMS, was compiled by a teen with CFS. The link follows: http://www.offerutah.org/YOUTH BIG GUIDE 2.pdf.  

A very informative education meeting video that was filmed in December, 2008 featuring a youth panel comprised of kids from 17 to 24 who have been diagnosed with CFS and/or FM can be found at the following link: http://www.offerutah.org/YouthEducationMtg.htm

 We would like to thank OFFER for providing these informative resources.
 


 

BARBARA COMERFORD TESTIFIES BEFORE CFSAC

Barbara Comerford, former board member of NJCFSA and advisor on disability issues, was asked to testify on education accommodations for students with CFS at the October 28th meeting of the Federal Chronic Fatigue Syndrome Advisory Committee. Her testimony to the committee can be read here.


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

 

Brian's Story

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)

 


 

 

Hi, I'm Marissa. I am 16 years old, and I have Chronic Fatigue Immune Dysfunction Syndrome.
 

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. Good friends mean the world to me since it really takes some special people to take the time and understand when I am having bad days, spend time with me when I am hospitalized or take the time to learn about my illness so they can better understand that I probably can't do everything that they can.

Attending school when you have CFIDS can be a juggling act. Between the illness, the different levels of activity that I can handle, and doctor’s appointments, it can be overwhelming at times. When I was in grammar school, I tried to go to school for a full day and I would often end up absent. Now, I go for 2 classes a day and that seems to work much better for me. I go home and rest and then my home instructor comes to tutor me in my other classes. She is the most understanding person in the world. She takes the time to understand my bad days whether it is because I am too tired, in too much pain, or having cognitive issues...better known as “brain fog”. She has been simply amazing. When I don’t understand something, she finds another way to teach me. She has taught me all kinds of memory tricks. She often talks about “teaching outside the box” and it works for me! She has truly made a difference in my life and helps me to believe that I will achieve my goals one way or another. I hope to attend college to become a bilingual speech pathologist or a special education teacher.

 When I was younger, I was picked on because I was sick and I would miss school, go in late or have to leave early.  Most of the teachers I’ve had as well as people on the child study team didn’t really get it. They often commented on how good I looked. They didn’t realize that I could put on a great act for short periods of time and then would go home and “crash”.  Many 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. For a few months, I had my leg lock up and was told to go down the stairs on my rear end.  Then they put me on home instruction because I had to use a wheelchair and the school was not accessible. They had me come in after school to meet with a teacher for home instruction. It was a nightmare except that the teachers were really great. Few people really understood when I was in grammar school. The first person that actually “got it” was the superintendent. He was and still is very special to me. He would even let me nap in his office when I couldn’t make it through the day knowing that I really wanted to be there. 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.

Although I have been sick, I have been an "A" and "B" student. Now that I am in high school, people don’t notice as often 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.  There are still many people that don’t understand the illness. 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 but have even had one person say they wouldn’t work with me because they were afraid to catch something. My hope is that I will be able to help educate more people and other kids won’t have to go through many of the things I have.

 High school has been much better than grammar school was. Some of it has been because the kids are more mature and not quite as mean. Another part is due to understanding teachers that have followed my IEP and done their best to work around my illness. The school nurse, 2 of my teachers and my home instructor are really great with helping me out in school. I am able to go to school more often now because of the partial day schedule. There are still a lot of teachers and nurses that could learn from those who have helped me. Simple things can make a world of difference to someone with CFIDS.

 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. Another 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 thing you’re 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. Another 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 great friend took the time to read everything he could about the illness, spends time at my house when I’m not up to going out, and even sits in the hospital with me when necessary.

Since beginning high school I have made some really good friends that seem to be more understanding. Some do their best to understand while others simply go on with their lives. That’s just reality. The ones that stick around through the ups and downs are truly special people in my eyes. Over the last several years, I have learned which friends are always there and always supportive and they mean the world to me.

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. He has learned to see the signs of my crashes and tries to help prevent them. He has truly become the older brother I never had.

There are some very special people in my life…family members like my mom who is always trying to help me no matter what, close friends, and some of my teachers. 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 have all helped to make having this illness just a little easier.

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. Some days I can act like the other kids and other days I can’t even get out of bed 

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". Though sometimes I try to avoid giving in to the illness, it can get you when you least expect it if you don’t listen to your body. It leaves you feeling helpless at times.

For me, the trick is to make a difference and try to work to help in finding a cure. Over the last five years, I have run a gift auction that has raised more than $20,000 for the NJCFSA Research Fund and Medical School Scholarship Fund. This year, I was very excited to see $10,000 be allocated to a special research project.

I guess if I had to give someone advice about having this illness, I would say stay positive. Make a difference any way you can. Hold on to the people that are there for you and supportive...and reach out to others that go through the same things you do. Appreciate all the very special people in your life and believe that one day a cure will be found with the help of organizations like the NJCFSA.

 - 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


NJCFSA’s YOUTH EDUCATION COMMITTEE: ADVOCATING FOR KIDS WITH CFS

     Since its formation in 1995, the New Jersey Chronic Fatigue Syndrome Association has worked hard to improve the lives of children afflicted with CFS. Toward that end, the Youth Education Committee was founded by NJCFSA vice president, Betty McConnell.

     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.

  What is 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?

 Since 1998, we have participated in many pediatric education conferences and conventions. We have exhibited at the National Association of School Nurses Convention. We regularly exhibit at the New Jersey Education Association’s (NJEA) annual Convention.  Twice we have conducted a workshop for school administrators, school nurses, teachers and child study team members at the NJEA Convention. We have also exhibited at the New Jersey Pediatric Nurse Practitioner’s Association conference, the New Jersey Nurses Association and the New Jersey League of Nursing Association’s annual conferences and most recently at the New Jersey School Counselor’s annual conference. These conventions and conferences allow us the opportunity to reach a wide range of professionals—medical providers and educators—whose decisions impact the daily lives of kids with CFS.

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.
 

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