Saturday, October 2, 2010

Tuskegee #3?

Interesting essay by Hillary Johnson up on Osler's Web about the discovery of a "Tuskegee 2":
Inmates in a Guatemalan penitentiary, patients in insane asylums and soldiers in an army barracks were deliberately infected with syphilis or gonorrhea. According to [Susan] Reverby, infected prostitutes were recruited to infect Guatemalan prisoners. Reverby reported that ultimately 696 men and women were infected. According to records, the point of the project was to study the efficacy of penicillin, but Reverby reported that not everyone was cured.

Reverby linked the Guatemalan experiment of the 1940s with the notorious Tuskegee syphilis experiment that began in 1932 in Alabama. In this widely chronicled event, scientists at what would become the Centers for Disease Control identified 400 impoverished black men in Tuskegee with syphilis and denied them and their contacts treatment for the next four decades, purportedly to study the "natural history" of syphilis. In spite of the fact that treatment became available, and that the natural history of syphilis was already well-known, the CDC allowed blacks in Tuskegee to grow ill and to infect their spouses and even infants, who contracted the disease at birth. The Guatemalan debacle was headed by John Cutler, a Public Health Service doctor who was also involved in the Tuskegee experiment.
Johnson contemplates the possibility that the CDC has been treating ME/CFS in a similar fashion—deliberately allowing an infectious disease to spread so they could study its course.

Even with all the nasty politics surrounding ME/CFS, this speculation strikes me as a little paranoid. I find it easier to believe that the CDC is simply biased, and that its bias leads it to do very bad science.

The sad thing? If you're an ME/CFS patient, the world looks the same to you either way.


DeppityBob said...

I want to be at least a little naive and suggest they wouldn't do such a thing, not now, not after Tuskeegee. Any lack of attention to the issue I'd more ascribe to politics, lack of understanding, lack of vision, and prejudice against the possibility of such an invisible disease. I'd like to think we've learned something from the theory and practice of eugenics.

Anonymous said...

A little paranoid? Guess you haven't been sick with ME/CFS long enough. Nor do you know much of the history of the CDC and NIH involvement in the 1980's retrovirus that was found, destroyed and no more funding for it allocated.
Don't trust your government. IF you are sick with ME/CFS, then WHY have you been sick and why has noone in your government done a damn thing about it until WPI stepped in? Paranoid? This is reality. Sorry...

Three Chord Monty said...

Give Cinderkeys a break, okay? I know Hillary has been drawing comparisons to Tuskegee for awhile now. They may or may not be valid, we don't really know. She brought it up in "The Why."

I don't think it's unreasonable for the comparison to seem paranoid. It can both seem paranoid yet still be true. Cinderkeys is a great advocate for us, one of the few that is not afflicted, one of the few not afflicted who engage in advocacy because they know what this disease is. Whereas so many carers believe the CDC propaganda.

The language related to Tuskegee that Hilary found applied to CFS had to do with 'observing the natural progression of the disease,' or something similar. This was used in relation to the CDC's studies of 'unwell' populations in Georgia. But then one day that language simply disappeared off the web.

Since the Science paper there are a few things in a few places referring to CFS that are no longer displayed. Probably the most notorious example would be the "Dr. Crippen" blog.

I archived every ME/CFS-related diatribe that sadist put up before it disappeared from Google's cache.

There are other examples, but you get the idea. Is Hillary's take on the Tuskegee/CFS comparison paranoid? Perhaps. But that doesn't matter if it's true. Amidst all the incompetence that gets in the way of a full picture of conspiracy theory, it's a bit of a stretch, but perhaps not that much. Straus convinced everyone this was not serious, a psychological condition, you know the litany. So if they did actually pull a Tuskegee on us, they wouldn't have thought they were doing anything terribly wrong. And, as we know due to the Empiric definition, they were working with an 'unwell' population, which is far from the range of Ramsay ME/Canadian Consensus.

Meanwhile, of course, we rot.

Certain things written about us ('functional somatic syndrome,' et al) turn out to be written in disappearing ink.

Published papers don't.

Cinderkeys deserves our gratitude. I do think Hillary is onto something but it's difficult to suss out.

cinderkeys said...

Thanks, Three Chord Monty. :)

In Anon's defense, when I reread this post I realized I'd expressed myself badly. I've gone into more detail about what I'm skeptical about -- and what I'm not -- in a follow-up post.