Helping Hands

A Researcher and a Mother Help Others Learn to Help YPWCs

By Vicki Carpman Walker

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 — as a researcher and as a mother and an author — with young persons with CFIDS (YPWCs).

Researching Pediatric CFIDS
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 kids’ work-ups.

It’s expected that the results of this study will help Dr. Jordan and her colleagues refine the definition of CFIDS in children. It’s been considered that CFIDS in children may be slightly different than it is in adults, mainly because children’s biology is different that adults’. Intensively studying children who meet the official CFIDS case definition may provide other clues to what pediatric CFIDS really is.

Parenting YPWCs
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.

Lynn’s 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 haul.

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 long haul.

4. Guard the YPWC’s self esteem.

5. Compensate for the YPWC’s losses.

6. Commit yourself to the YPWC’s growth.

7. Advocate for the YPWC.

Discussion Time
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 children’s 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 it’s essential that they continue supporting and advocating for their children in the face of all adversity.

* 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 publications.