Frank's Issue #1
May 1, 2000
For years I've promised on my web site, "For Parents of Sick and Worn-Out Children," that I would start a newsletter. Well, here it is.
I'm calling it Frank's. Frank's what? Frank's news, editorials, columns, information, whatever. Frank's.
Frank's will come out irregularly, when I have time, energy, and something to communicate. Often it won't have news, but opinion. Or fiction that I write about CFS. But today there is news, so read on.
If you don't want Frank's, let me know. I'll take you off the list. If you have something you think I should include, let me know. I may not put it in, but I will send you a response.
Today's news is that it's now been proven, finally, that fatigue, and Chronic Fatigue Syndrome-like illness, are common problems of American children and adolescents.
You wouldn't think that would take proving. But the Centers for Disease Control is still saying that fatigue is rare in these age groups. Among adolescents, for instance, one of their studies showed 0 cases of CFS per 100,000 teens, while another shows only 50 per 100,000 (a rate of 0.0005%).
If you deal a lot with CFS in kids you know these numbers are wrong. Now Karen Jordan and her associates on the Chronic Fatigue Syndrome Epidemiology Project have proved it. Jordan's work can be found in "Prevalence of Fatigue and Chronic Fatigue Syndrome-Like Illness in Children and Adolescents," in Journal of Chronic Fatigue Syndrome, 2000, volume 6, #1. Older issues of this journal are online but, so far, this one is not.
I do have to confess I am a little prejudiced about Jordan's study. Years ago I had a tiny part in getting it off on the right foot. She had just been recruited by Leonard Jason at the Epidemiology Project and was in a rush to get the children's telephone survey organized. But she was still brand new to CFS studies! She knew very little about it. So Rebecca Moore and I bombarded her with information about how CFS in children and adolescents differs from the illness in adults. She is a quick learner and soon got it right! Now she's an expert.
Jordan's team spoke on the telephone to more than 12,000 randomly selected Chicago households containing children ages 5-17. They found that serious fatigue afflicted 4 percent of the children in these household, and that 2 percent had "CFS-like" illness. This means that 2 of each 100 had a pattern of fatigue and other unexplained physical symptoms that fits the CDC criteria for CFS. Without a physical exam and other tests, of course, an actual diagnosis can't be made. But it stands to reason that a significant proportion of those with CFS-like illness do have CFS.
For instance, in a larger study of adults by Leonard Jason, 4 percent of the sample had prolonged fatigue and 2 percent had CFS-like illness, just as Jordan found in young people. When these adults were given a physical exam and other tests, about 15% turned out of have CFS. That makes a rate of 0.42% (4.2 per thousand). This estimate is now generally accepted outside the federal government, which clings to its own numbers.
If Jordan's study is sound (and I believe it is), one can infer that up to 0.42% of American children and adolescents have CFS.
But let's forget CFS for a minute. Look at the other numbers. Four percent of children have serious fatigue! Two percent have unexplained illness that includes fatigue and at least four other symptoms, such as frequent headache, impaired memory or concentration, post-exertional malaise, sore throat, abdominal pain, and on down the list. According to the Census there are 51,411,000 million kids ages 5 through 17 in the United States. This means if Jordan is right there must be 1,028,220 cases of CFS-like illness among American children.
Isn't a million kids with serious fatigue and many other physical symptoms a problem in itself??? Shouldn't the public health system be taking a look at this?
I see often see kids who are disabled by severe orthostatic intolerance in the forms of NMH (Neurally Mediated Hypotension) or POTS (Postural Orthostatic Tachycardia Syndrome) but whose symptom patterns do NOT fit the very fussy CDC definition of Chronic Fatigue Syndrome (for which see http://www.fmnetnews.com/pages/criteria.html ). These children have what I call "pure POTS" instead of CFS/POTS. They don't even fit into the "CFS-like" category--but they're still disabled!
You can see why the government prefers the CDC numbers. They see few cases, nothing to worry about, no need to spend a lot of money.
What me, cynical? Well, maybe a little.
We do certainly need to push harder on the medical system, and the government, to get done what needs to be done about these sick children.
Best Wishes to All,
Frank
Copyright 2000 by Frank Albrecht. This text may be downloaded for personal use. Other uses are free but require permission.
My home page is For Parents of Sick and Worn-Out Children.