Let Us Not Forget the Children

By Alan Cocchetto 2002

    A friend of mine recently loaned me the book What Really Killed Gilda Radner by Neenyah Ostrom. In
it, there is a chapter titled Children with CFIDS. I believe it is important to report on CFS/ME in children
and this interview with Dr. David Bell, by author Neenyah Ostrom, reminds us that adults aren't the only
ones harmed by this disease. Since I have seen and been contacted by several parents of children with
CFS/ME, I thought that this article would be most appropriate since this tragedy applies to the innocent
children just as it does to the adults stricken with the same disease.

     In Dr. David Bell's interview, by Ostrom, he described a study of five children who were part of a
"cluster outbreak," and presented an overview of the immunologic abnormalities found in patients involved
in the outbreak. Dr. Bell, who then was a clinical instructor in the Department of Pediatrics at the University
of Rochester, gave his presentation at the First International Conference on Chronic Fatigue Syndrome and
Fibromyalgia in 1990. Bell presented his overview of the children's immune system abnormalities which
included a nearly total lack of cell-mediated immunity and lowered natural killer cell activity. He also
discussed the "family clusters" he had observed as a result of this "cluster outbreak" in upstate New York.
Furthermore, he stated that fifty percent of the children who meet the CDC criteria for CFS have at least one
other immediate family member who exhibits "exactly the same complex of symptoms."

     What I found particularly intriguing, by Ostrom's interview, was Bell's description  for his system of
"staging" the severity of the illness in children. Since I haven't run across this information previously, I felt
it best to present it to our readers because it serves as a reminder of the severity of the illness in patients.                 

     The staging system that Bell used was "very crude." Repeating from the interview: In Stage 0, the
patients have regained 100 percent activity and have no trace of symptoms. Furthermore, "they consider
themselves to be completely cured."

     In Stage 1, the patients seem to have regained 100 percent normal activity, but they "feel that there's a
residual of symptoms from CFS."

    Stage 2 patients have mild to moderate symptoms with 70 - 75 percent of their pre-morbid activity. Bell
stated that they were "functioning pretty well." Furthermore, he mentions that many of the adults have gone
back to work full-time.

     Stage 3 patients have regained moderate activity, approximately 50 percent of  their activity before
becoming sick.

     Stage 4 patients exhibit what Bell described as "severe symptoms" as they were only functioning "about
25 percent and are intermittently confined to bed."

    Stage 5 patients, however, were "essentially bedridden with very severe symptoms" according to Bell.
At the conference and in the interview, Bell presented the immunological findings
in five children. In the group of five children, all had been at Stage 4 for a "prolonged  period of time."
Their ages ranged from 12 - 18 years and had been ill for between two and six years. The group included
three girls and two boys. Immune system tests showed  "a wide variety of abnormalities" and no one result
was consistently abnormal "except for  some NK (natural killer) cell subsets which are clearly in the lower
range." In addition, the children showed disturbed T-cell CD4/CD8 cell ratios. He found, for instance, one
of the children's cell ratio to be 4.3 while another was 3.0. Bell noted that this disturbed ratio was
due to a decrease in the T-cell CD8 (suppressor) cell population. Two of the other children showed an
increase in the CD20 (B-cell) population. He pondered on whether or not the  patients with decreased CD8
cells differed from those with increased CD20 cells.

     In addition, one of the five children had a "clearly elevated" level of antibodies to HHV-6 while the
others were "somewhat elevated." Bell however, pointed out that it was not clear what level of antibodies
against HHV-6 was "normal" for this group.

     Bell also learned that one child in the study had an elevated alpha-interferon level while "virtually all of
the children we've tested whose illness is stage three or higher, had a lowered response to skin testing" using
the CMI Multitest. This is a test for delayed hypersensitivity. (Author's note: The CMI test is used on AIDS
patients and they are anergic - little or no cell mediated immunity is present!) Bell stated that three of the
children in this study were "very close to being anergic."

     Bell mentioned that of the 36 children who met the CDC criteria, 50 percent of them had at least one
other family member in the immediate family who had "exactly the same complex of symptoms" but not all
of the family members met the CDC criteria.

     In light of the many child victims of this illness, I hope that this column served to highlight some of the
medical information known about the children from "the early days." I also ask that our readers continue to
help those of us here, at the National CFIDS Foundation, to raise research money aimed at identification of
and therapeutic intervention for not only the adults stricken with the disease but also for the many innocent
children who face this illness as well.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606