Sunday, August 28, 2011

Death threats

If you've been following the news lately, you may have come across a story or two about a small group of psychiatrists who study myalgic encephalomyelitis, aka "chronic fatigue syndrome." The psychiatrists in question say they've received death threats from ME patients ... the very people they're trying to help! Gasp!

The reason for the threats, they claim, is that patients with ME—a disease that causes chronic pain, debilitating exhaustion, and worsening of symptoms after even minimal exertion—are opposed to research that implies their illness could be linked to psychological problems.

"I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones," says Simon Wessely, one of the more famous (or infamous) ME psychiatrists. "That has taken me to Iraq and Afghanistan where quite frankly I feel a lot safer – and I don't mean that as a joke."

He argues that the threats are potentially as damaging to medical research as attacks made by animal rights activists.

The ME community has responded by collectively rolling its eyes.

Digging a bit deeper

Before you jump to any conclusions, rest assured that ME patients and advocates do NOT believe that death threats are a legitimate means of activism or self-expression. There's a lot of anger, yes, but assassination attempts are not on the table.

So why aren't they taking the threats seriously?

First of all, there's more than a little skepticism that the threats exist. From Hillary Johnson, author of Osler's Web:
In a BBC radio interview, [Wessely] also reportedly told a reporter that he and his mates have started taking precautions that animal researchers in their institution employ ... The reporter failed to ask Wessely to elaborate, unfortunately. The BBC cited a brief letter that ended with the phrase, "You will all pay." That's a death threat?
From Phoebe Snowden, a journalist whose career ended due to ME, in response to a brief on the subject from Times Higher Education:
I am horrified by your standards of journalism. Where is the evidence that any of these "threats" exist, and why are you people reporting this ludicrous story without questioning its validity?
Here's Angela Kennedy, a social sciences researcher and parent of someone with ME, poking one of the biggest holes in the story's credibility:
In 2007 I was once falsely accused of 'personally harassing' Professor Wessely by a Wikipedia administrator, claiming Professor Wessely had told him this himself. I publicly oppose and critique psychogenic explanations for ME/CFS, on both a political and academic level. I have NEVER harassed Professor Wessely or contacted him ... When I wrote to Professor Wessely's employers, asking that he clarify he had no part in the false claims made on Wikipedia in 2007, they refused to provide that clarification.
So, there's that.

Mind you, I have no trouble believing that there's been hate mail. A researcher quoted in The Guardian described a plausible example:
"I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse," said Professor Myra McClure, head of infectious diseases at Imperial College London. "One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months."
Again, the ME community doesn't advocate harassment. But I'd guess that most would understand where the letter writer's anger comes from. That's because they understand the consequences of the psychiatric perspective.

For instance ...

In 1988, 12-year-old Ean Proctor had been sick for two years with ME, deteriorating to the point where he could no longer walk or speak. Simon Wessely (at the time a senior registrar in psychiatry, not yet famous enough to be getting death threats) made the case that Ean's symptoms were psychiatric, and that he needed to be removed from his home so he could escape the influence of his "overinvolved" parents.

They removed him, stuck him in a psychiatric ward, and severely restricted contact with his family. Treatment included not taking him to the bathroom so he'd be forced to go there unassisted. (Didn't work. He wet himself and sat for hours in soiled clothes.) Treatment also involved pushing Ean in his wheelchair very fast, then stopping abruptly to make him do something to prevent falling out. (Didn't work. He toppled onto the floor.)

And then there was this:
... the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool.
On the bright side, they fished him out before he died. But the incident might explain that letter writer's oddly specific fantasy—why he imagined watching McClure drown instead of, say, being attacked by a swarm of killer bees.

And again

You may be thinking that what happened to Ean was an isolated incident. It's not.

In 2003, an ME sufferer named Sophia Mirza was sectioned in Britain—police broke down the door and took her to a psychiatric hospital. Two years later, she died from complications of the disease. Though Mirza only spent 13 days in the hospital, her mother has gone on record saying that the ordeal had a devastating effect on her already fragile condition. She had actually been improving until that point.

Just three weeks ago, a 12-year-old girl in Spain was taken by police to a local psychiatric ward. Although she's been diagnosed with severe ME by specialists, Social Services thought she should be attending school. They're forbidding the girl's mother (who also has ME) from seeing her.

Don't assume this kind of thing can't happen here. It has happened here.

Death threats

Most ME sufferers don't experience an involuntary trip to the pysch ward. Unfortunately, they also don't receive useful treatments. The lion's share of funding for ME goes to psychological research promoted by the aforementioned psychiatrists; as a result, the best many patients can get is cognitive behavioral therapy and graded exercise therapy. While this form of psychological intervention isn't quite as bad for desperately sick people as throwing them facedown into the deep end of a swimming pool, studies show it does more harm than good.

With no treatments that address the biological roots of their disease, ME sufferers tend to die earlier.

And then there are the extreme cases. Given what happened to Sophia Mirza, that kid in Spain has good reason to fear for her life.

On the flip side, not one psychiatrist has died at the hands of an ME patient.

Maybe the media is chasing the wrong story.

Thursday, August 25, 2011

Ten years

Ten years ago today, I bought my first keyboard. It was kind of a big deal.

I'd been toying with the idea for some time. While I already had a good upright piano to practice on, I wanted something a little more fun. A little more portable. I had this crazy notion that maybe one day I'd be in a band, and I couldn't do that with an instrument that didn't fit in a carrying case.

My cautious, prudent side was skeptical. Keyboards cost a lot of money. Yes, I could buy one and still make rent, but what if I lost my job somewhere down the line? Then that keyboard-sized hole in my savings might really mean something.

Eventually my cautious, prudent side was overruled. I decided to take the plunge.

And so, on Saturday, August 18, 2001, I went to Rainbow Guitars and tried out all the decent choices. It quickly came down to two different Rolands. One cost $1,600. The other cost $1,100. I didn't care so much about the extra voices the more expensive one offered—all I really needed was one good piano voice. But I did like its best piano voices just a little bit better.

I kept switching from one Roland to the other, trying to figure out how much I cared. Finally, I settled on the RD700, the more expensive of the two. I'd be living with the sound quality for a long time. If I was going to do this, I should do it right.

Then I stalled. Even though I'd been contemplating this for weeks, simply plunking down $1,600 (plus $400 for amp, keyboard stand, and bench) after spending less than an hour in the store seemed so impulsive. My cautious, prudent side warned me that I'd be second-guessing myself later if it felt like an impulse buy.

So I made a deal with Cautious and Prudent. I'd come back in a week, after giving the decision some time to settle, and I'd buy everything then.

Done and done. A week later, August 25, 2001, I was the proud owner of a really decent professional keyboard.

Now, on the tenth anniversary of that day, I think back to the logic that finally made me OK with the idea.

If I do this now and lose my job later, I'm not going to regret the lost savings. I'm going to be happy that I got my hands on a keyboard when I had the chance.

Today I'm a freelancer. Financial stability is elusive. Some weeks are better than others.

I don't regret the lost savings. I'm glad I got my hands on that keyboard when I had the chance.

Happy anniversary.

Wednesday, August 24, 2011

In praise (mostly) of technology

My hard drive is officially dead. The guy I hired to try to fix it called me today and said his attempts had failed. He could try to recover the data, but that would cost at least $600. Eh, no.

There goes the Cinder Bridge mailing list. Poof.

And yet, I am not hating technology this week. Technology was my friend at Saturday's FireFest gig. Technology enabled a listener to record a couple of our songs with a small, presumably affordable camera; now the videos are on YouTube, Facebook, and the blog.

After we played, a new fan wanted to sign up for the mailing list. I didn't have pen and paper on me. He got onto Cinder Bridge's Facebook page from his smartphone and hit the "Like" button so he'd get updates that way.

He probably wouldn't have had the ability to do that just eight years ago, when the band was getting started.

So all in all, tech remains on my good side. For now.

On another note, if you were on our mailing list, or you would like to be on our mailing list, send me e-mail at susan (at) We'll set you up.

Sunday, August 21, 2011

Live from FireFest

The awesome Frank Ramos likes to go to music events around Tucson and videorecord the performers. Here are a couple of songs he captured from last night's gig.

"The Line." You may appreciate this if you've ever spent a lot of time in the company of an addict, particularly one whose fortunes are tied to yours.

Our ME/CFS advocacy song. Frank was only able to get the last few words of my introductory spiel, so here's a caption:

I wrote this song about somebody living with myalgic encephalomyelitis, a disease that causes chronic pain, crushing exhaustion, and in many cases, early death. If you're wondering why you've never heard of myalgic encephalomyelitis, that's probably because it's more commonly known as "chronic fatigue syndrome," which is a stupid name for a serious disease. The song is called "Everybody Knows About Me."

Thanks, Frank!

Friday, August 19, 2011

The gig you may not have heard about

My "work" computer's hard drive died a week and a half ago. Since then, I've been running around, dealing with the fallout. I got the drive diagnosed, bought a new computer, set up the new computer, and stumbled through Windows 7 after clinging for many years to XP, an older and much less annoying operating system.

Fortunately, I had all my freelance work backed up elsewhere.

Unfortunately, I hadn't thought to back up anything else. Like Cinder Bridge files.

Like the Cinder Bridge mailing list.

We have a gig tomorrow night. I've sent out invitations to local Facebook friends, and we've contacted a handful of people outside of Facebook, but there are quite a few fans whose contact information we don't have anywhere else.


There's still a chance the old hard drive can be saved. I'll find out one way or another next week. In the meantime, if you're on our mailing list and haven't heard from us, we're not ignoring you.

Oh, and if you're in the vicinity and would like to hear us Saturday night, here's the pertinent info:


Saturday, August 20, 7 p.m., to Sunday, August 21, 2 a.m. Cinder Bridge plays from 9 to 10 p.m.

People's Imports/Party to the People
276 S. Park Ave.
Tucson, AZ

Other info
Other bands include One Heartbeat, Lunasong, and 8 Minutes to Burn. In addition to live music, FireFest offers organic food, healthy drinks, and belly dancers. BYOB.

Hope to see you there. If you sign up for our mailing list, I'll try not to lose you this time.

Saturday, August 13, 2011

Breaking news: People like music!

A new medical study shows that music may have beneficial effects on cancer patients. For instance ...
The authors ... found evidence that music interventions may have a beneficial effect on several physiologic responses, including reducing heart and respiratory rates. These results are also consistent with findings from another Cochrane systematic review on the use of music with coronary heart disease patients, which also found a reduction in heart rate.
(Full Medscape article here. If you hit a registration wall, you can currently get around it by googling cancer music anxiety and clicking the first search result.)

This is interesting stuff, worth exploring further. The headline, though, is what caught my attention:

Music Lowers Anxiety and Boosts Mood in Cancer Patients

Really? Gosh, Medscape, that's fascinating! Who'd have thunk that people with cancer get the same emotional goodies out of music as everybody else?

Sunday, August 7, 2011

When practice doesn't quite make perfect

Occasionally I write a song that's hard for me to sing. I don't mean emotionally. I mean technically. Maybe part of it is out of my range, or there's a note I have to sustain for a long time without breathing.

"You're the writer," I hear you cry. "Why would you make it difficult for yourself?" Well, mostly I don't. If I can, I tailor my songs to my strengths. But every once in a while it just doesn't sound as good the easy way. So I write it the way I think it should sound, and then practice the hell out of it.

Hold Me in Your Arms is a good example. It's a love song, and it begins with me humming over a minimal piano accompaniment. The notes would be in my range if I were na-na-ing them, but they're uncomfortably low when hummed. To do the passage without cracking or sounding weak, I have to hold my face in a way that doesn't obstruct the airflow.

Practicing this has helped a lot, but I still haven't been able to count on hitting the notes consistently.

Yesterday at rehearsal, I sang the song for the first time in a while. And just before we started, a thought popped into my head. What if I just hummed louder?

Yep. That did it. I'd been humming softly for a more sultry effect, but going louder didn't change the feel. All I had to do was back off the mic a little.

Practice is good. But sometimes it helps to come to a sticky spot fresh.