What NJCFSA has done to Help Children with CFS.

 

Betty McConnell
Chairperson, NJCFSA Youth Education Committee

Report presented to: Nancy Butler, CFS Advisory Committee

Education Subcommittee

April 2004

Amended, December 28, 2004

Department of Health and Human Services

CFS Advisory Committee Meeting

January 10, 2005

New Jersey Chronic Fatigue Syndrome Association Youth Education Committee’s Programs

     Having raised a son with CFS, I knew what our N.J. CFS Association had to do to improve the lives of children with CFS in New Jersey.  We needed to educate the pediatricians, pediatric nurses, school administrators, teachers, school nurses, school counselors and school psychologists.  We identified all the state and national organizations of these professions to exhibit at their conferences.

     Here are a couple of personal accounts of our first exhibiting experiences:

     In 1998 we contacted the National Association of School Nurses and discovered that they were having a two-day regional conference in Atlantic City, N.J.  We found out they were offering exhibit space and we exhibited for our first time.  It was a fulfilling experience. After checking my notes from this conference, I noted that the most repeated statement from the school nurses was “I had no idea that children got this illness!” They knew of CFS to be a woman’s disease. The first day the nurses took our handouts and the next day they came back to speak to us one-on-one and had very good questions. After reading our handouts a nurse recognized a student she had in their school system that fit the criteria of CFS and was excited to share the information with the child’s parents when she got home.  We went to the conference with five boxes of handout articles and left with one box half full.  It was a success.

     In 1998 we contacted the New Jersey Education Association (NJEA), an affiliate of the National Education Association. NJEA has an annual convention in Atlantic City, N.J. every November and we contacted them to exhibit.   NJEA has 180,000 members which breaks down to 115,000 (teachers, administrators, school nurses, counselors, psychologist), 45,000 support personal (secretary, cafeteria, janitors) and 20,000 retired members.  55,000 NJEA members attend their two-day convention each year.

     It was quite an experience to exhibit for them our first year.  We had no idea the amount of educators we would come in contact with.  As with the school nurses NJEA members did not know that children got this illness.  They thought we were there to educate them about CFS in teachers because we heard over and over that “teachers are tired too!”  One of the best things that came out of exhibiting at the NJEA convention is that we found out about the New Jersey School Nurses Association.  Their members were glad to meet us and were thankful for our handout materials. We also spoke with school principals, teachers, counselors and child study team psychologists.

    The following year I wrote to NJEA and asked if our association could present a workshop on CFS and they agreed.  The medical advisor to the NJCFSA board of trustees, Dr. James M.Oleske, Chief Pediatric Virologist, Professor of Pediatrics, at UMDNJ, gave a lecture to school nurses on the diagnosis and treatment of Pediatric CFS. Jon Sterling gave a lecture on what accommodations are needed by CFS students along with a brief description on what our association does for children with CFS.  We had standing room only in our meeting room.  Another success.

     We regularly exhibit at the NJEA Convention and have conducted another workshop on Pediatric CFS by their invitation. NJEA also invited us to write an article on pediatric CFS to be published in the NJEA newsletter “The Review” that will reach all of their 180,000 members. 

  We exhibited at the following other New Jersey organizations annual conventions and conferences: New Jersey Pediatric Nurse’s Practitioner’s Association, New Jersey Nurses Association and N.J. League of Nursing Association and most recently at the New Jersey School Counselors Association.

   Our Youth Education Committee participated in May 12th CFS Awareness Day with the following projects.

    In 2003 we mailed our pediatric education packages to the Commissioner of Education of N.J.,  Dr. William Librera and to the superintendents of schools of each County in N.J. (21) and to the New Jersey State Special Education Advisory Council and to the five Catholic Dioceses in N.J. for its schools. We mailed out sixty packages to these educators.  We received favorable feedback such as a Superintendent’s office called to ask if they could copy our package and distribute it to each of the schools in their county, were contacted by the N.J. School Counselor’s Association to exhibit at their annual conference and were contacted by a school to give a lecture on pediatric CFS.  We considered this mailing a success.

    For 2004 Awareness day we mailed our pediatric education package to members of the American Academy of Pediatrics, New Jersey chapter members.  We targeted the Executive Council Members, the Counselors, Standing Committee Members, and members of their Task Forces. Our medical advisor, Dr. James Oleske wrote our cover letter introducing our association and our pediatric education package. As a result of this mailing, we were contacted by many of the pediatricians requesting additional packages for their colleagues. We have asked the Academy of Pediatrics if we could give a lecture on pediatric CFS at one of their annual conventions or conferences.

We help parents and children with CFS in the following ways:

     First and foremost we offer moral support to both the parents and children with CFS. Through our NJCFSA phone hotline, members of our Youth Education Committee will speak with the parents and help them with any problems they have encountered having a child with CFS. We send parents our pediatric education package free of charge. Our association maintains a current physician’s referral list that is most helpful to the parents. 

What the New Jersey Chronic Fatigue Syndrome Association has done to help children with CFS.

The following is an account of different projects and programs that NJCFSA has done that have directly or indirectly helped children with CFS.

     Through NJCFSA members advocacy our association wrote legislation asking the state of New Jersey for the funding of medical education and public awareness programs. Our legislative CFS Bill A-507 was signed into law by Governor Christine Todd Whitman on April 16, 1999.  New Jersey appropriated $95,000 for the Department of Health and Senior Services to create a physician’s manual on the diagnosis, treatment and management of CFS patients. In 2002, our manual “A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome” was distributed by the Academy of Medicine of New Jersey to 14,000 Physicians in New Jersey.  The manual includes a chapter devoted to CFS in Children and Adolescents and has been proven to be a valuable resource to physicians.  Our consensus manual was included in our pediatric education package that we mailed to the pediatricians for our 2004 awareness campaign. Our manual can be downloaded from our NJCFSA website and also from the N.J. Department of Health and Senior Services website, under health topics.   

    In 1999, NJCFSA established a $1,000 Scholarship for New Jersey high school seniors who are continuing their education in a college or technical school. The mailing of the scholarship to every secondary school both public and private has proven to be an awareness project in itself.  Our association has received calls from guidance counselors requesting additional information of CFS in adolescents. Since 1999, seventy students have applied for our NJCFSA scholarship.  Our scholarship application is available on our NJCFSA website www.njcfsa.org.  

     In 1996, NJCFSA established a lending library of books and tapes for our members. It is available to NJCFSA members through the mail.  Our library has the most up to date books and videotaped lectures on CFS.  Our library includes many books and lectures on pediatric CFS. Our lending library is available on our website as well.

     NJCFSA sponsors two medical conferences a year in New Jersey that have included lectures on pediatric CFS. To educate physicians we offer CME’s at our conferences. Our conferences are videotaped and available to parents or schools upon request through our NJCFSA lending library.

     NJCFSA has exhibited at the Medical Society of New Jersey and the New Jersey Osteopath’s annual conferences/conventions.  

A summary of what NJCFSA does for children.

1.     Created a pediatric information package.

2.     Identified pediatric organizations within New Jersey.

3.     Mailed our pediatric education package to such organizations.

4.     Exhibited for pediatric organizations at their annual conferences/conventions.

5.     Gave lectures and workshops at pediatric organizations conference/conventions.

6.     Maintains a phone hot line for NJCFSA members.

7.     Maintains an up to date physician referral list.

8.     Created a Scholarship for New Jersey graduating seniors.

9.     Maintains an up to date lending library.

10.  Sponsor two medical conferences in N.J. each year.

11.  Advocated for legislation for CFS education programs, which funded our physician’s manual.

12.  Have a proclamation written by our Governor to proclaim May as CFS Awareness Month in New Jersey. There is a paragraph devoted to pediatric CFS in our proclamation. 

     NJCFSA’s proposed projects for 2005

1.     To increase awareness of Chronic Fatigue Syndrome, we are working to establish a scholarship for a medical student at the University of Medicine and Dentistry of New Jersey.

2.     Since we have established a working relationship with the schools, school nurses, and pediatricians, NJCFSA is considering the possibility of doing our own prevalence study of CFS in children and adolescents in New Jersey. We have taken the first steps on this project by consulting with Professor of Pediatrics, Dr. James Oleske and Assistant Professor of Pediatrics, Dr. Walter Zahorodny, from UMDNJ.  Dr. Oleske is our NJCFSA medical advisor and Dr. Zahorodny is currently doing a prevalence study on autism in children in New Jersey.  Drs. Oleske and Zahorodny gave us many helpful suggestions on how it could be done. Also offering advice for our prevalence study is Dr. Rosemary Underhill. Dr. Underhill recently did CFS research using our NJCFSA membership and authored a paper (at press) titled “Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Among Family Members of CFS Patients.”

     Our next step is to discuss this information with our board and seek funding. 

     All of these programs and projects would not be possible if not for the support of all of our New Jersey Chronic Fatigue Syndrome Association’s board of trustees.  We have a great team of dedicated people who are working together to help children with CFS in New Jersey.  These programs and projects would not be possible if not for the financial support of our NJCFSA members.

Advisors to our NJCFSA Youth Education Committee

James M. Oleske, MD, MPH, Francis-Xavier Bagnoud Professor of Pediatrics, Director, Division of Pulmonary, Allergy, Immunology & Infectious Diseases, Department of Pediatrics, UMDNJ, Newark, N.J.
Medical Advisor NJCFSA

Susan M. Levine, MD, Infectious Disease, New York, New York
NJCFSA Medical Advisor, Medical Advisor, Scholarship Committee

Malcolm Schwartz, DO, FACOP, Chief of Pediatric Endocrinology, Monmouth Medical Center, Long Branch, N.J.

Dr. Edward L. Hoffman, Margate, N.J.
Medical Advisor, Scholarship Committee

Dr. Rosemary Underhill, MB, BS, MRCOG, (UK), Upper Saddle River, N.J.
NJCFSA Trustee, Medical Advisor, NJCFSA Pediatric Prevalence Study & UMDNJ Scholarship

Kenneth J. Frideman, Ph.D. Associate Professor of Pharmacology & Physiology, UMDNJ, Newark, N.J.
NJCFSA Trustee, NJCFSA Treasurer, U.S. Department of Health and Human Services, CFS Advisory Committee
Advisor, NJCFSA Prevalence Study & UMDNJ Scholarship

Jon Sterling, MA, ACAS, Oradell, N.J.
NJCFSA Trustee Emeritus, NJCFSA Past President, NJCFSA Past Treasurer, NJCFSA Youth Education Committee, Advisor, NJCFSA Prevalence Study & UMDNJ Scholarship

Past, Chairman of the Board of Directors of the CFIDS Association of America, Member, US Department of Health & Human Services, CFS Coordinating Committee

Peggy Walk, Florham Park, N.J.
NJCFSA Trustee, NJCFSA Youth Education Committee
Advocate for Children with CFS

All of the organizations we have exhibited or educated are affiliates of National Organizations. Everything we have done for children in New Jersey can be done nationally.  Every one of the N.J. pediatric organizations we have contacted, exhibited, or mailed were very receptive of our materials and information.

I have compiled a list of National Pediatric Organizations that you might be interested in. They are as follows.

U.S. Department of Education
400 Maryland Ave. S.W.
Washington, D.C.  20202
1-800-872-5327
www.ed.gov

They have the Office of Special Education & Rehabilitative Services (OSERS)  They assist in the education of children with disabilities.

National Education Association (NEA)   
1201 16th Street NW
Washington, D.C.  20036
202-833-4000
www.nea.org

NEA has affiliates in each of the 50 states.  NEA has 2.2 million members. The NJEA is an affiliate of NEA. Not all state NEA affiliates have state conventions such as NJEA. 

 

American Association of School Administrators
801 N. Quincy Street, Suite 700
Arlington, VA   22203
703-528-0700
www.aasa.org

American School Counselor Association
1101 King Street, Suite 625
Alexandria, VA 22314
703-683-2722
www.schoolcounselor.org

National Association of School Nurses  (NASN)
Western Office

1416 Park Street
Suite A
Castle Rock,  CO   80109
303-663-2329

Eastern Office
163 U.S. Route 1
P.O. Box 1300
Scarborough,  ME   04070
207-883-2117
www.nasn.org
NASN has 51 state affiliates in 49 states and D.C.

National Association of School Psychologist  (NASP)
4340 East West Highway
Suite 402
Bethesda,  MD   20814
301-657-0270
www.nasponline.org

American Academy of Pediatrics
President, Carol Berkowitz, MD, FAAP (2004-2005)
www.aap.org

National Headquarters
The American Academy of Pediatrics
141 Northwest Point Blvd.
Elk Grove Village,  IL   60007
847-434-4000

Washington, D.C. Office
The American Academy of Pediatrics
Department of Federal Affairs
601 13th Street  NW
Suite 400 North
Washington,  D.C.  20005
202-347-8600

National Association of Pediatric Nurses Associates and Practitioners (NAPNAP)
20 Brace Road,Suite 200
Cherry Hill,  N.J.  08034
856-857-9700
www.napnap.org

Society of Pediatric Nurses  (SPN)
7794 Grow Drive
Pensacola, FL   32514
1-800-723-2902
www.pedsnurses.org
They have 23 current state chapters and 9 forming state chapters

National Institute of Child Health & Human Development
Building 31 Room 2A32, MSC 2425
31 Center Drive
Bethesda,  MD   20892
www.nichd.nih.gov

My recommendations to the CFS Advisory Committee.

I highly recommend that you educate the national pediatric organizations listed in my report by either exhibiting or conducting a workshop at one of their annual conferences.

For an example, The American Academy of Pediatrics next national conference will be held in Washington, D.C., on October 8-11, 2005. I would like to recommend that the CDC and the CFIDS Association of American, through their joint medical education program, contact the Academy of Pediatrics and either offer a workshop or submit an abstract on pediatric CFS for this conference. The deadline for abstract submission is April 15, 2005.  This would be a great start to educating pediatricians nationally.

I urge the committee to consider recommending to the Secretary of Health the establishment of various grant or other programs to assist state and local CFS/FM organizations in carrying out the parts of their missions that are concurrent with the missions of the CDC & HRSA concerning research, disease management/care, and provider/patient/caregiver/school education. The contract the CDC has with the CAA for provider education is very important but it should be noted that state & local CFS organizations are the ones that interact most directly with the CFS patient community, especially children, their parents, their schools and their pediatricians. With increased resources in terms of employees and dollars, much more could be done in New Jersey & elsewhere.

I would also like to recommend that the CFS Advisory Committee consider contacting the National Institute of Child Health and Human Development at the National Institutes of Health and ask them to publish a booklet on Pediatric Chronic Fatigue Syndrome. They have published many informative booklets on many childhood illnesses.  CFS is not on their list. The NIH and CDC have published booklets on CFS but no federal health agency has ever published a booklet specifically on pediatric CFS.  It would help the children tremendously. Their address and website is listed in my report.

My last recommendation comes from my experience of exhibiting at one of the Medical Society of New Jersey’s conventions.  A pediatrician asked me how he was suppose to know how to diagnose CFS in children since he has not been given any guidelines on how to do so. He was frustrated by not knowing if there was a diagnostic criterion for pediatric CFS and where to go to find it.  I don’t know if this has been suggested before, but I would like to recommend that a case definition be specifically written on pediatric CFS.  The Canadian ME/CFS Clinical Working Case Definition included “Features of ME/CFS in Children” in their document.  Wouldn’t it be advantageous to give the pediatricians the proper tool to help diagnose this illness in children and adolescents?

How do we judge the success of our pediatric education programs?

      Nancy Butler asked me what data we have collected to support the success of our educational efforts. The committee should realize that due to limitations of our financial resources and the fact the people who carry out this work are ill with CFS, that we are fortunate to be able to carry out the programs outlined above. If we had additional resources, we could develop measurements to evaluate the success of our programs and collect the data that make such evaluations possible.

     However, since we have no federal or state grants to assist the development on that level, we have no published data to support the success of our programs.

     Rather, we judge our success through the communication we have established with the pediatric organizations we have either exhibited or mailed. These organizations are now calling us asking for more information or help instead of us calling them.  This is quite an accomplishment for any CFS organization in the United States today.  We also judge the success of our programs by the phone calls we no longer receive from parents.  Before our pediatric education programs started we used to get frequent calls from parents saying their child’s school, school nurse or guidance counselor did not know about CFS and would not cooperate in helping their child receive a proper education.  These calls are now few and far between.  

What I mailed to Nancy Butler for your committee.

1. Our NJCFSA Pediatric Education package so you can see what we mail to the parents, schools and pediatricians. 

2. A copy of our Physician’s manual “A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome.”

3. A copy of our NJCFSA Scholarship Application.

4. A copy of our N.J. legislative Assembly Bill No. 507

5. A copy of the Congressional Bill H.R. 4365 cited as the “Children’s Health Act of 2000.”

Thank you for considering my report on what the New Jersey CFS Association does for children with CFS.  It was an honor presenting this information to your committee.
If you need additional information I can be reached by email,elizabethmcconn@cs.com

Betty McConnell, Port Republic, N.J.
Advocate for Children with CFS
Vice president, NJCFSA
Chairperson, Youth Education Committee
Chairperson, Scholarship Committee
Librarian, NJCFSA


Home | FAQ | Inspiration | Archive | Library  | Meetings | Conference | Newsletter| Links| Join