Prevalence Studies Try to Count YPWCs

By Frank Albrecht, PhD

Originally published 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 per 100,000.

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 adolescents.

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 questions!

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 CFIDS.