Sep 062011

NPR, I really thought I could count on you to be what you describe yourself as on your about page: a “thriving media organization at the forefront of digital innovation.” On Monday’s two segments on ME/CFS here and here you let me down.

The first segment of Monday’s Morning Edition began well enough, with first-hand accounts from ME/CFS patients. They sounded credible, and one was eloquent enough in her description of ME/CFS vis a vis cancer, that she actually envied the way cancer patients are treated by the community at large. This was powerful and hit home.

Then you brought out the heavy hitter Tony Komaroff who explains how it’s hard to define ME/CFS and that doctors are still skeptical because the ‘syndrome’ is being defined by patient symptomology. You then go into how it screws up your brain, your immune system, your energy metabolism, your life.

After that you trot out the gammaretrovirus, XMRV, and promptly kick it right back to the curb. Sorry, guys! It was as if the writers cribbed all the press releases on lab contaminants the night before. Where’s Amy Dockser Marcus when you need her?

But the kicker was the second segment where you get real down and dirty with CBT (Cognitive Behavioral Therapy) and GET (Graded Exercise Therapy). As if we can’t get enough of our two best friends, there they are again on NPR for the whole world to have a listen to.

Apparently it would behoove ME/CFS patients to “change how [we] experience our symptoms.” We’re a whiney lot who catastrophize and need a serious slap in the face with positive thinking.  Also, if we aren’t wallowing in our own misery, then we’re without a doubt so out of shape we just don’t even get it. No, we are worse than that, we are ‘deconditioned.’

So. Let me see if I get this? If we get off our duffs and meld slowly back into the bionic selves that we were before we got the ‘grippe’ and take the talking cure, then the disease was just nothing more than a stepping stone to our own self-actualization?

As I wrote before, how I wish it were true that ME/CFS patients are simply depressed and deconditioned.

A little light creaked through the door when Dr. Lucinda Bateman spoke on your program. A clinician with experience, who’s been in the trenches since the 80’s outbreaks in the US, she gets push/crash. She understands why ME/CFS patients want to do, do, do when they feel good, and that these same patients ‘crash’ afterwards with disturbing symptoms. She doesn’t get CBT, she says. She doesn’t know the cause and doesn’t think GET will do anything beneficial. And like pretty much everyone with solid mental faculties, she waits for science to pinpoint the cause of ME/CFS.

I wonder, what is it about XMRV that the majority of the press is doing such a lousy job researching it? I know science reporting is hard, but this is as important as AIDS!

You know, positive thoughts and fresh air benefit people who suffer from any chronic illness no matter who they are. They just won’t cure true ME/CFS.

 Posted by on September 6, 2011