What
NJCFSA has done to Help Children with CFS.
Betty McConnell, Chairperson,
NJCFSA Youth Education Committee
Education Subcommittee
April 2004
Department of Health and Human
Services
CFS Advisory Committee Meeting
January 10, 2005
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.
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.
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.
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.
NJCFSA Medical Advisor,
Medical Advisor, Scholarship Committee
Medical Advisor, Scholarship
Committee
NJCFSA Trustee, Medical
Advisor, NJCFSA Pediatric Prevalence Study & UMDNJ Scholarship
NJCFSA Trustee, NJCFSA Treasurer, U.S. Department of Health
and Human Services, CFS Advisory Committee, Advisor, NJCFSA Prevalence Study
& UMDNJ Scholarship
NJCFSA Trustee, 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
NJCFSA Trustee, NJCFSA Youth
Education Committee
Advocate for Children with CFS
I have compiled a list of
National Pediatric Organizations that you might be interested in. They are as
follows.
400 Maryland Ave. S.W.
Washington, D.C. 20202
1-800-872-5327
They have the Office of
Special Education & Rehabilitative Services (OSERS) They assist
in the education of children with disabilities.
1201 16th Street NW
Washington, D.C. 20036
202-833-4000
NEA has affiliates in each of
the 50 states. NEA has 2.2 million members
Our NJEA is an affiliate of
NEA. Not all state NEA affiliates have state conventions such as ours.
Their next annual NEA
conference is July 1-6, 2005, Los Angeles, California,
Exhibitors welcome
801 N. Quincy Street
Suite 700
Arlington, VA 22203
703-528-0700
Their next annual conference
is Feb. 17-20, 2005 in San Antonio, Texas,
Exhibitors welcome
1101 King Street
Suite 625
Alexandria, VA 22314
703-683-2722
Their next annual conference
is June 26-29, 2005, Orlando, Florida
Exhibitors welcome
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
NASN has 51 state affiliates
in 49 states and D.C.
Their next annual conference
is June 30-July 3, 2005, Washington, D.C.
Exhibitors welcome
4340 East West Highway
Suite 402
Bethesda, MD
20814
301-657-0270
Their next annual conference
is March 29-April 2, 2005, Atlanta, Georgia
Exhibitors welcome
President, Carol Berkowitz,
MD, FAAP (2004-2005)
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
They have 57,000 members
Their next National Conference
is October 8-11, 2005, Washington, D.C.
Exhibitors welcome
20 Brace Road
Suite 200
Cherry Hill, N.J.
08034
856-857-9700
Their next conference is March
31-April 3, 2005, Phoenix, Arizona
Exhibitors welcome
7794 Grow Drive
Pensacola, FL 32514
1-800-723-2902
They have 23 current state
chapters and 9 forming state chapters
Their next annual conference
is April 15-17, 2005, Philadelphia, PA
Exhibitors welcome
National Institute of Child
Health & Human Development
Building 31 Room 2A32, MSC 2425
31 Center Drive
Bethesda, MD
20892
They publish many booklets on
childhood illnesses
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.
<>
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.
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.”
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
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