Friday, May 12, 2017

ME/CFS Awareness Day 2017

ME/CFS AwarenessME/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 While the flawed paper hasn't been retracted yet, subsequent activity has forced the researchers to release the data so that others can examine it.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.

Monday, March 27, 2017

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.

Monday, February 13, 2017

"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.

Saturday, December 31, 2016

From the desk of 2016

Dear everybody,

It's been a long year, and many of you will be glad to see my back come January. Which is understandable, I suppose. A lot of unpleasant things have happened in our time together. But before I shuffle off, I'd like to make a humble request:

Please stop blaming me for frickin' everything.

I mean, David Bowie. I get it. He was beloved and brilliant and it never occurred to you that he was capable of dying. Sadly for all of us, however, rock stardom doesn't confer immortality. Bowie battled cancer for 18 months. I had to fight 2015 to get him. If I'd lost and he died 11 days sooner, would that have made you happier?

Of course, it isn't just Bowie's death you blame me for. Many others followed. I promise you, it wasn't because I enjoyed the carnage. There was a reason every time. Bowie: liver cancer. Alan Rickman: pancreatic cancer. Prince: prescription drug overdose. Muhammad Ali: Parkinson's disease. Carrie Fisher: heart failure. I could go on, but you get the picture.

Or maybe not. Because in addition to shaking your fists over people who in theory should've had many good years ahead of them, I've seen you cursing me out for Harper Lee (89), Gene Wilder (83), Leonard Cohen (82), Florence Henderson (82), Debbie Reynolds (84), and John Glenn (95).

Think about that last one for a second. Ninety. Five. Years. Old.

People haven't been dying more under my watch. People YOU KNOW OF have been dying more, because they've gotten to the age where that's the thing to do. You think I was bad? From the perspective of everyone who's old enough to be aware of those who are getting up there, every year after me is going to be worse.

Then there's politics. A significant number of you are angry with me because of the election. If you're one of them, I'd like to refer you back to a recent predecessor of mine, 2000. Remember when your guy didn't become president after winning the popular vote? Remember how you complained about how stupid the Electoral College is? It's been 16 years. What have you done about that since then besides make snarky posts on Facebook?

Stop blaming me. It doesn't do you any good. And it hurts my feelings.

That said, I hope 2017 treats you better. Just understand that it's at least partially on you to make that happen. Don't wait too long before you do. As you may have noticed lately, life is short.

Happy New Year.

Love,
2016

Saturday, November 19, 2016

Normal

"This is not normal," said the Bookmans staffer.

Or something to that effect.

Bookmans had hired us to play a two-hour set. Ron the Drummer and I were talking to the staffer during our break when the election came up. As weary as I've been of politics lately, it made me feel better. Because the first set had been weird.

It went well, mind you. People were responding really positively to us. One woman requested that we play a song we'd debuted at a previous gig. A few others came over to sign up for the mailing list and/or buy a CD. But this was our first post-election performance, and—as has been the case every time I've ventured outside since November 8—it was strange to see people walking around and shopping and being happy as if everything were normal. Strange to play and to chat up the crowd as if everything were normal. Tucson, though located in a red state, is a blue city; I was fairly confident that over 50 percent of our listeners shared our sentiments.

Anyway. The second set felt better, even though we didn't play any differently. After hearing somebody besides me acknowledge how not normal everything was, things seemed more ... normal.

Of course everybody was going about their lives. It's not like those of us who were unhappy with the outcome were going to do anything else.

So, it was a good gig. We hope to have many more like them. Especially if anyone wants to hire us for events that benefit the ACLU,
the Anti-Defamation League, Black Lives Matter, the Center for Reproductive Rights, the Council on American-Islamic Relations, the International Refugee Assistance Project, the Mexican American Legal Defense and Educational Fund (MALDEF), the NAACP Legal Defense Fund, the National Resources Defense Council (NRDC), Planned Parenthood, ProPublica, RAINN, the Southern Poverty Law Center, the Trevor Project, and other like-minded organizations.

Thursday, September 22, 2016

Lies, damn lies, and the PACE trial

At long last, the travesty known as the PACE trial has been debunked, and the ME community is in a celebratory mood.

Don't have the slightest idea what I'm talking about? Lemme back up.

Every now and again for the past eight years, I've been writing posts on this little band blog about a disease called myalgic encephalomyelitis, aka ME, aka ME/CFS, aka "chronic fatigue syndrome." Symptoms commonly include chronic, debilitating pain; greater susceptibility to fatal cancers and heart failure; crushing exhaustion that isn't relieved by rest; and post-exertional morbidity, in which symptoms get worse after even mild physical exertion.

(Remember the bit about post-exertional morbility. It will become important soon.)

Because the cause of ME is unknown, many doctors have written it off as being all in the person's head. Back in 2011, a group of UK researchers championed that belief, theorizing that ME develops like this:
  1. Patient becomes ill with a legit virus
  2. When patient gets over the legit virus, they find physical activity more difficult due to deconditioning
  3. Patient develops a fear of physical exertion because it's more difficult
  4. Deconditioning becomes worse due to prolonged lack of activity
Their proposed solution: Get ME patients to exercise just a tiny bit, then increase the amount of time they devote to exercise in tiny increments. Eventually they'll realize that exertion won't hurt them and they'll get over it. In the meantime, therapy will help them challenge their supposedly false illness beliefs.

And so they tested their hypothesis in a study they called the PACE trial. The results (they said) supported their claims. Significant numbers of people (they said) recovered after receiving graded exercise therapy (GET) and cognitive behavioral therapy (CBT).

Great news, right? But actual ME patients were angry. They knew from experience that if they tried to exert themselves past a certain point, they would feel a lot sicker (see "post-exertional morbidity" above). GET was the worst thing they could try.

Further, the methodology was hinky. While a number of flaws graced this study, I'll focus on just one: the definition of "recovery." Before the trial began, the researchers decided how healthy the subjects had to be after treatment for them to count as recovered. After the trial ended, the researchers changed their definition of recovery to include sicker people.

The result: some subjects who were sick enough to get into the study in the first place would count as "recovered" at the end, even if their health remained exactly the same.

The more science-savvy members of the ME community asked to look at the researchers' data so they could do their own analyses. The researchers—some of whom happen to have financial ties to disability insurance companies—refused to give it up.

And that's how things stood until October 2015, when journalist David Tuller published a huge article exposing all the flaws. Finally, parties outside the ME community started paying attention. More people requested the data. An ME patient named Alem Matthees forced them to release it through a freedom-of-information request. He and some other patients did analyses on it and came to a SHOCKING conclusion about the study:



Yeah, turns out that when you don't move the "recovery" goalposts, neither GET nor CBT have a significant effect.

So the travesty known as the PACE trial has been debunked, and the ME community is in a celebratory mood.

Now let's fund some real science, shall we?


Friday, September 16, 2016

Dancing in the Bookmans, part 2

Sometimes the best part of a performance is the goof you almost made but didn't.

While playing our cover of "Miss You" by the Rolling Stones, I flashed back to a video I saw a day or two ago: Mick Jagger and David Bowie's "Dancing in the Streets" with the music removed.

It's hard to sing when you're trying not to laugh.

Here. You have GOT to watch this.