Prevalence Studies Try to Count
By Frank Albrecht,
in Youth Allied By CFIDS, Spring 1996
How many of us are there?" That's a
question YPWCs (young persons with CFIDS) often wonder about. It's also an
important practical question. If there are a lot of YPWCs, there will be
attention and money for research and help may come sooner. But if there are few,
help for YPWCs may be a long time away.
The federal government's Centers for
Disease Control (CDC) tracks diseases, telling us what diseases are out there,
how serious they are, who gets them and where they're hitting. It's been hard to
convince this agency that CFIDS is a common illness. Their web page
(http://www.cdc.gov) and their booklet, "The Facts About CFS" still (April 28)
say there are only four to 10 cases of CFIDS per 100,000 adults - meaning there
are between 8,000 and 19,000 cases in the whole country! That's a lot fewer
people than belong to The CFIDS Association of America.
By contrast, university-based researchers
have found 100-200 cases per 100,000. Dr. Leonard Jason, a psychologist at
DePaul University who is studying CFS prevalence in Chicago, told me this spring
he believes there are between 300,000 and 500,000 cases among American adults.
The CDC is revising its web page, and will
include the higher numbers they have found in other studies, such as the one in
San Francisco which estimated that 76-233 per 100,000 U.S. adults have CFS. By
the time you read this they may have done that. But you may wonder how the
government could get its numbers wrong to start with. (Then again, you might not
wonder - it's the government, isn't it?)
But really, it's not easy to figure this
out. Let's consider the difficulties.
First of all, there's no test for CFIDS. If
you think someone has diabetes or Lyme disease or arteriosclerosis (hardening of
the arteries), you test and find out for sure. But someone who seems to have
CFIDS might actually have many other things. Only when you have ruled out all
the others can you say it's probably CFIDS.
Also, as every PWC knows, a lot of
physicians don't "believe in" CFIDS. These doctors tell PWCs there's nothing
wrong, or that they're depressed. CFIDS kids get lectured not to avoid school or
exaggerate their problems. The problem for the CDC is that they generally get
their prevalence (rate in the population) data by asking doctors how many
patients they have with a given illness. From 1991 to 1993 they did this with
CFIDS, getting information from physicians in four cities. The result was the
unbelievable four to 10 cases per 100,000. Even worse, they claimed they found
only seven cases among children and adolescents. YPWCs barely existed! And that
meant no money, no research, no attention, and no help for children and
adolescents with CFIDS.
In 1993 they decided to ask 36 school
nurses how many kids in their schools had CFIDS. The answers calculated out to a
rate of 24 per 100,000. But, again, the only kids counted were the ones who had
been given a diagnosis. What about all the others?
The right way to find CFIDS prevalence is
with community surveys, contacting people at their homes (usually by phone) and
asking about their symptoms with questions like, "Do you have fatigue?" "Do you
have muscle or joint pain, headache, etc.?" That gives you the number of people
who have might have CFIDS. Then you have to give medical exams to all these
suspected cases. Even then you can't be entirely sure, because, with no test,
diagnosing CFIDS is a little subjective - it's a judgment call by the doctor.
This kind of work takes a lot of time and
money. And the researchers usually ask only about adults. Kids with CFIDS have
been just about ignored, not just by the CDC but by almost everyone. I don't
know how many articles I've read about CFIDS where words like "persons" or
"patients" meant adults only! (Does this tell you something, or what?)
Community studies can go wrong, too. You
have to ask your questions exactly right. A 1994 community study in San
Francisco found no children (ages 1-12) and only one adolescent (ages 12-18)
with CFIDS, because they asked adults if any children in their houses were
fatigued. The problem is that undiagnosed YPWCs are usually thought of as lazy,
depressed, withdrawn, uninterested, inactive, avoidant - anything but just plain
tired or sick!
In addition, when the CDC found only one
young person who seemed to have CFS in their San Francisco study, they made the
mistake of assuming that pediatric CFIDS was not a problem. When CFIDS
Association Executive Director Kim Kenney persuaded CDC to re-examine their data
in light of the total number of young persons they surveyed, they found, to
their surprise, that the relative prevalence of CFIDS in young persons was 116
An important first step was made by CDC at
the CFS ICC meeting when Dr. William Reeves admitted that they were "wrong" when
they said only a year ago that kids rarely get CFIDS. A second step is CDC's
plan to incorporate questions designed to seek out YPWCs in an upcoming
community-based prevalence study in Wichita, Kansas.
In addition, there's now a chance a
full-scale study will focus on the prevalence of CFIDS among children and
Dr. Karen Jordan works with Dr. Jason at
DePaul University on a $2 million study funded by the National Institutes of
Health to look for CFIDS prevalence among persons 18 and older. But after Dr.
Jordan read some articles about CFIDS among young people, and then talked online
with our own newsletter editor, Rebecca Moore, she decided to find a way to
include kids in this study. With Dr. Jason's support Dr. Jordan now has her
telephone surveyors asking about children and adolescents - and asking the right
I mentioned above that without a medical
workup you can't be even half-way sure someone has CFIDS. In Dr. Jason's adult
survey, workups are provided free to suspected PWCs. So far, however, there's no
money to do the same with suspected youth cases. Drs. Jordan and Jason are
writing a grant to get money so that young people can end up with the same full
evaluation that is being given to the adults. If they get it, there finally will
be some solid numbers on the prevalence of pediatric CFIDS.
Dr. Jordan said at the April 10 CFS ICC
meeting that four of the first 370 children contacted by her telephone surveyors
have "CFS-like" problems. That's a lot! There are many thousands of phone calls
to go, and- don't forget - many "CFS-like" problems come from conditions other
than CFIDS. But I personally believe that Dr. Jordan's final results may show
that CFIDS is at least as common in kids as it is in adults. What a big
turn-around that would be!
There are many, many YPWCs. I hope proving
that will lead to getting more help for them. So stay tuned!
Frank Albrecht, Ph.D., is a mental
health counselor on the Eastern Shore of Maryland. His daughter, Sarah, has