ME/CFS Awareness Day 2017

ME/CFS is a chronic disease that involves debilitating pain, cognitive impairment, crushing exhaustion, and a host of other nasty symptoms. Sufferers also experience post-exertional morbidity, which means they feel worse following even light exertion and require an extended recovery period. Many people with ME/CFS are housebound or bedbound.

Despite the severity of the disease, far too many people dismiss "chronic fatigue syndrome" as hypochondria or malingering. It's neither.

There is no cure. There isn't much in the way of treatment.

But there has been some progress of late.

Good research

The Open Medicine Foundation is conducting desperately needed research on the disease. In a study published in fall 2016, they found evidence that patients have a metabolic signature similar to animals in hibernation. You can donate to the OMF here.

Pushback on bad research

A deeply flawed study from a few years ago claimed that ME/CFS patients could be helped by exercising. They can't. Exercise is harmful to ME/CFS patients. The study gained traction despite complaints from sufferers who called out the study's obvious methodological problems. But within the past year, David Tuller published a series called Trial by Error that went into great (great great) detail about said methodological problems. The scientific community finally started paying attention. While the flawed paper hasn't been retracted yet, subsequent activity has forced the researchers to release the data so that others can examine it.

If you don't have time to read all of Trial by Error, this New York Times piece by David Tuller and Julie Rehmeyer will fill you in.

For more details on ME/CFS 101, try this handy FAQ.

And seriously, please donate to the Open Medicine Foundation.

Eric Hansen

Someone called me out on "Where's your gratitude?" it's there, it's just pissed off."

—Eric Hansen, from a fundraiser update

It seems like half of my scant posts lately have been about musicians who have recently died. This is the one I didn't want to write.

Eric Hansen was my second vocal coach. After my first teacher showed me how to sing forcefully, Eric taught me how to dial it down. A songwriter himself, he often had suggestions about how I might change my lyrics. I don't think I took a single suggestion, but it always kind of delighted me that he offered them so freely—I knew I could trust him to be honest.

When my life transitioned into something more difficult, a while after he'd stopped being able to give lessons, he invited me to lunch and offered support. He told me to take care of myself.

Eric had a congenital lung disease called alpha-1 antitrypsin deficiency. Four years ago he got a double lung transplant and a shot at a normal life. After treatments, he could sing again.

Last year, his lungs started going into rejection. This year they told him they couldn't put him on the donor list again. Today he died.

I'm grateful that he got a few more good years in. I'm grateful that, shortly after he discovered his donated lungs were in rejection, I got to see him at last year's Tucson Folk Festival, hug him, and listen to him perform one last time.

The gratitude is there. It's just really, really pissed off right now.

Now please go sign your damn donor card if you haven't done it already.

"Can I start again?"

I was seven the first time I ever performed in front of a live audience. My piano teacher had gathered his students and their parents together at his house for an annual piano recital, as piano teachers do. I'd been taking lessons for about a year. While I don't remember being particularly nervous, the excitement of the situation must've gotten to me, because I completely forgot the notes a few measures in.

"Can I start again?" I asked.

I could, I did, and I made it all the way through. It didn't occur to me that this might be something to be embarrassed about until years later, when my parents recounted the story.

The second time it happened was at an open mic, a year or so before Ron the Drummer and I met. I got through one verse of my song "Honky-Tonk Piano" and blanked on the lyrics.

"I forgot the words!" I said cheerfully. Then I started over.

By then I understood that performers were supposed to gut their way through a song no matter what. I was a little chagrined, even if I didn't show it. Sadly, I didn't have Ella Fitzgerald's genius for vocal improvisation, and there was nothing I could do but stop. The crowd was friendly and forgiving, though, and the second go went fine.

The third time was in the early days of Cinder Bridge. I played the opening chords of Moths in Search of the Moon, opened my mouth to sing, and nothing came out but hacking and coughing. We stopped. Ron procured something with honey in it for me. We started again and got through it with no problems. We were playing at a Borders Books & Music—total atmosphere gig—so there's a good chance that a lot of the audience didn't even notice.

Those are all the times. I remember every one.

Sunday during the Grammys, it happened to Adele. She was doing a George Michael tribute, sang kinda flat, and stopped because she believed that Michael, whom she'd known and admired, deserved better. Although Adele's kinda-flat sounded better than most mere mortals' in-tune, her do-over was a lot better than the first try.



Some people are apparently complaining about her lack of professionalism. Whatever. I find it comforting when a mega-talent like Adele has a human moment like that. I think she did her friend proud.