Tuskegee tactics vs. the cohort problem

Let's try this again.

In my last post, I responded to Hillary Johnson's essay likening of the CDC's mishandling of ME/CFS to the infamous Tuskegee syphilis experiment. For those unfamiliar with the history, Tuskegee medical researchers studied almost 400 black men with syphilis, didn't tell their subjects that they were infected, and didn't treat them for it—all so they could study the natural course of the disease.

I said that even with all the nasty politics surrounding ME/CFS, it was easier for me to believe that the CDC was simply clueless and biased than to believe they were pulling another Tuskegee.

A commenter felt my skepticism was naive, saying that I must be unfamiliar with the CDC's history. I'm not. But upon rereading my post, I realize that I came across as more of an apologist than I intended.

So, just a little bit of the history.

Back in 1996, a congressional investigation revealed that the Centers for Disease Control and Prevention had diverted funds meant for ME/CFS to other diseases.

Since then, the CDC has diluted its definition for what it considers "chronic fatigue syndrome"—it includes many patients who are likely suffering from depression or some other disease, but not ME/CFS. Using the diluted definition, they have focused almost exclusively on behavioral treatments. And that's where the problems begin.

They'll test the effects of cognitive behavioral therapy and graded exercise therapy, using subjects that may or may not actually have ME/CFS.

The real ME/CFS patients will experience post-exertional morbidity as a result of the graded exercise therapy, and they'll be much more likely than the others to drop out of the study.

The researchers won't count the dropouts when calculating their results.

They have continued to skew their results in this fashion despite criticism from other ME/CFS researchers.

Why? Maybe they really are just biased toward thinking that ME/CFS is a psychological disorder instead of a neuroimmune disease. I'm not ruling the possibility out. Not entirely. But if another congressional investigation revealed something more nefarious—influence from insurance companies, for instance—let's just say I wouldn't fall over from the shock.

So why am I skeptical that they're pulling another Tuskegee?

The facts don't fit.

We're horrified by the Tuskegee study today because the scientists treated human beings like lab rats. Because they let patients infect other human beings, suffer, and die in the name of science.

What they didn't do was study patients who had, say, schizophrenia, and lump them in with the syphilis patients.

If the CDC wanted to study the natural course of ME/CFS in the same way that Tuskegee did for syphilis, they'd want to actually study people with ME/CFS.

We wouldn't have the cohort problem.