Thursday, September 8, 2011


So much going on, I completely missed NPR's Morning Edition segment on Chronic Fatigue Syndrome Monday.

I heard about it over the weekend, and was a little worried it was going to be about what was going on in the UK with and ridiculous "Death Threats for Scientists" thing.

But actually it was pretty much all I could have hoped for; the news item I've been waiting for.

It's almost five minutes long, not just a blurb.

It talks about the day to day reality of being bedfast and housebound. The frustration with uninformed doctors. A soundbite from Anthony Komaroff.

Over the years, researchers have identified various brain, immune system and energy metabolism irregularities. Komaroff points to a study done a couple of years ago by the Centers for Disease Control and Prevention. It showed that the majority of doctors now recognize chronic fatigue syndrome as an illness. Today, an estimated 1 million Americans are thought to have it.

But lots of regular folks are still doubters, at least in the experience of Cynthia Johnson of Lake Oswego, Oregon. She says the disbelief makes the disease worse. Johnson is a breast cancer survivor but in October 2009, she was hit with a bad flu that hasn't gone away.

Ms. CYNTHIA JOHNSON: People really admire you for fighting cancer, and they're very excited that you survived. They congratulate you for surviving. Nobody does that, day to day, for CFS. They are just like, oh.

And it ends:

The results of those two studies on whether there's an XMRV connection may be released at a meeting in Canada at the end of the month. Meanwhile, advocates for people with chronic fatigue syndrome are pushing for a name change, to make the syndrome sound like more than a description of someone who just needs a nap.

It's a rare thing with CFS stories, but I feel like these journalists actually really did their homework and were telling the real story. As best they could in five minutes.