Friday, October 29, 2010


Ron the Drummer, a veteran of many pre-Internet bands, has recounted how tough it was to cover songs back in the day. If you wanted accurate lyrics, you had to buy the album. If the lyrics didn't come with the album, you had to transcribe them yourself, which meant listening over and over again until you got them right—hopefully.

I was reminded of this tonight when I attempted to look up the lyrics to "Of Thee I Sing" by Leon Russell.

I love this song. It is joyful and exuberant and catchy and always makes me want to sing along. Except I can't, because the vast majority of the words are unintelligible. So tonight, I finally got around to tracking them down. I fired up Google, entered "of thee i sing" lyrics leon russell, and found ...

... nothing.

Well, not exactly nothing. I did come across abridged lyrics on a message board, but I have no way of knowing whether the guy who posted got them right. Maybe he has inside knowledge. Maybe he's just guessing.

Hell, the one line I thought I could understand was "Middle of the night" at the beginning of the chorus, and according to the poster, it's "Beauty like a knife." Listening again, I still can't tell which one of us is right.

I feel oddly betrayed. I've become used to the ability to find this stuff whenever I want, and I've developed a sense of entitlement about it. Where are my lyrics? Give me my lyrics!

Tuesday, October 19, 2010

The Bee Gees and Pink Floyd: Together at last

Oh. My. God. You have to drop everything you're doing and watch this right now.

You wouldn't think that a mashup of "Stayin' Alive" and "Another Brick in the Wall Part 2" was possible, would you. Sick and twisted and brilliant.

I wonder if Wax Audio obtained permission from the artists to do this thing. If not, I really hope lawyers don't intervene. I don't want to live in a world where this doesn't count as fair use.

Hat tip: @Larry Denneau.

Monday, October 18, 2010

Officially yours

While flipping through radio stations this weekend, I happened upon a DJ declaring 94.9 MIX FM to be Tucson's official at-work station.

Which got me thinking. How does one become the official at-work station for a particular city? Is there an authority that bestows that honor? Does somebody hold a contest? Are actual Neilsen ratings involved? Or is this one of those things people can make up without running afoul of truth-in-advertising laws because the claim is meaningless anyway?

Probably the latter.

On an unrelated note, I am happy to report that as of today, Cinder Bridge is North America's official listen-while-you-do-dishes-and-dance-around-the-kitchen-like-an-idiot band. We are very proud.

Sunday, October 17, 2010

Cantatrix ex machina

The good news: as a singer, there's still little chance that my job will be outsourced to India.

The bad news: I am in danger of being replaced by a machine.

A really CREEPY machine.

Tuesday, October 12, 2010

Vote WPI!

The American Express Members Project is donating a total of $1 million to five charities. If you'd like to nominate the Whittemore Peterson Institute as one of the recipients, go here:

Voting is open to everyone!

My fingers are crossed. The Whittemore Peterson Institute is the best hope I've seen so far for people with neglected neuroimmune diseases like ME/CFS, fibromyalgia, and Gulf War syndrome. They need all the funding they can get.

Friday, October 8, 2010

XMRV: One year on

One year ago today, we saw the publication of the Science paper linking ME/CFS to a retrovirus called XMRV.

Since then there have been a bunch of studies that failed to replicate the Whittemore Peterson Institute's results—none of which were true replication studies. Since then we have seen one study that linked ME/CFS not with XMRV, but other MLVs.

Since then, the Whittemore Peterson Institute opened its new facility at the University of Nevada School of Medicine.

The pace is picking up. Progress makes me hopeful.

It also makes me impatient.


Sunday, October 3, 2010

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.

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.