A Researcher and a Mother Help Others
Learn to Help YPWCs
By Vicki Carpman
Originally published in Youth Allied By
CFIDS, Fall 1997
The final session in the day-long "The
CFIDS Chronicle Live!" Conference on October 26 focused on pediatric chronic
fatigue and immune dysfunction syndrome (CFIDS). Karen Jordan, PhD and Lynn
Vanderzalm discussed their work ó as a researcher and as a mother and an author
ó with young persons with CFIDS (YPWCs).
Karen Jordan, PhD has
found that girls under 12 seem to be at increased risk for having symptoms that
closely resemble CFIDS. Dr. Jordan and researchers at DePaul University are
surveying Chicago-area families by telephone and asking them if any member of
their household has symptoms of CFIDS. Dr. Jordan is heading up the part of the
study which deals with people aged five to 18.
Of the children and adolescents surveyed
who report having "CFIDS-like illness," defined as significant chronic fatigue
plus four or more symptoms of CFIDS, the largest group is comprised of girls
under age 12. The other three groups: girls 13 and up, boys 13 and up, and boys
12 and under, all have similar rates of "CFIDS-like illness."
The next step in this project is conducting
medical and psychological exams on the people who have "CFIDS-like illness" to
rule-out other causes for the symptoms and determine which people in this group
actually have CFIDS. Dr. Jordan just received a $200,000 supplemental grant from
the National Institutes of Health to pay for the kidsí work-ups.
Itís expected that the results of this
study will help Dr. Jordan and her colleagues refine the definition of CFIDS in
children. Itís been considered that CFIDS in children may be slightly different
than it is in adults, mainly because childrenís biology is different that
adultsí. Intensively studying children who meet the official CFIDS case
definition may provide other clues to what pediatric CFIDS really
Lynn Vanderzalm and her daughter, Alisa, have had
CFIDS for nine years. They both became ill at approximately the same time and
have supported one another through these years of illness. Because of her
experiences as a member of a family affected by CFIDS, Lynn interviewed members
of other families living with CFIDS and wrote a book, Finding Strength in
Weakness, to help other CFIDS families.
Lynnís talk focused on what YPWCs need and
what adults can do to help meet those needs. The five things the YPWCs said they
most need from adults are:
1. Believe us.
2. Try to understand us.
3. Accept us.
4. Encourage us.
5. Stay with us for the long
Lynn had advice for the adults who are
trying to help YPWCs:
1. Trust the YPWC.
2. Encourage the YPWC.
3. Commit to support the YPWC through the
4. Guard the YPWCís self
5. Compensate for the YPWCís
6. Commit yourself to the YPWCís
7. Advocate for the
Following the formal presentations, there were a few
minutes remaining for the people in attendance to ask questions. Many parents of
YPWCs said they are having a difficult time getting their childrenís schools to
provide necessary educational services. Although disabled YPWCs are entitled to
services under two federal laws (IDEA and Section 504*), convincing the schools
that the students are truly disabled (and not simply avoiding school) can be
very difficult. Lynn advised parents that itís essential that they continue
supporting and advocating for their children in the face of all
* For more information about federal
education law, contact The National
Information Center for Children and Youth with Disabilities (NICHCY, PO Box 1492, Washington DC 20013,
800/695-0285, http://www.nichcy.org), which provides resources, referrals to
other national and local organizations, free information packets and lists of