Fade to 2011

As every December draws to a close, I try to think of a goal for the next year. Something challenging but doable. This year I can't think of a thing. There's the usual one, where I say I'll write at least four songs, but that's it.

I didn't even come close to achieving 2010's non-songwriting goal, which was to find Cinder Bridge's audience. I barely even tried. Little day-to-day tasks overwhelmed me. I've barely had time to practice, and I pushed any activities that didn't come with a clear roadmap off to the side, where they lay forgotten.

I haven't done anything to promote us. I haven't even been blogging regularly for the last four months.

Do I have nothing at all to show for 2010?

Feeling disheartened, I opened up GarageBand around 11 p.m. and loaded a song that Ron and I recorded in his living room. I've wanted to apply a fadeout to this song for some time, but kept procrastinating because I didn't know how to use the fadeout feature and GarageBand's help documentation looks like this:

To add a manual fade-in or fade-out:

Click the disclosure triangle in the track’s header, or, for the master track, choose Track > Show Master Track.

Choose the volume curve in the menu in the track’s header.

Add control points to the beginning of the volume curve for a fade-in, or to the end of the curve for a fade-out.

Move the control points to adjust the length and intensity of the fade-in or fade-out.

It doesn't look so hard until you actually try to do it, and then you discover that nothing in the interface looks like a disclosure triangle, and in fact you do not know what a disclosure triangle is, or why anybody would call something a disclosure triangle. Also, what is a volume curve, and how do you choose it? Who writes these things?

But I pressed on, because there was less than an hour left until midnight, and by god I was going to accomplish SOMETHING before 2010 was over.

One Google search for better directions later, followed by a little experimentation, and I had my fadeout.

So there you go, 2010. Don't say I never gave you anything.

Happy new year!

Soundtrack

"Thursday" by Asobi Seksu just started playing on Last.fm. I have no idea who Asobi Seksu is; I'd never heard of this band before. But the song is making me feel like I'm in a movie. It has that soundtrack vibe.

I should be doing some emotionally relevant activity while this is on. Something to signify that things are finally turning around, or that I've taken decisive action. The montage.

As the song draws closer to its conclusion, it sounds as though my personal plot, whatever it is, has reached some kind of resolution. Now the credits are rolling.

After another song that doesn't fit my mood, Mason Jennings' "Moon Sailing on the Water" starts up. I picture myself on a dock somewhere, head tilted slightly to the side, staring ahead, contemplating whatever events have brought me to this point.

Funny how certain music can make everything seem more relevant, more significant, more imbued with drama.

What songs make you feel like your life is a story worth telling?

* * *

Update: Somebody more well versed in Japanese than I am has informed me the Asobi Seksu is a band name, not the singer's name. I have fixed.

Rain Dance: An experiment in free association

Note: This post is a bit of an experiment in itself, offering a close and rather drawn-out look at what went into the writing of one song. I'm not sure how interesting it will be to anyone besides me and the person who inspired the post. Feel free to lightly skim all the lyrical drafts. They're not so much there to be scrutinized as to show how much they changed over time.

* * *

In my last post I talked about how my creative process doesn't involve a spontaneously dashed off first draft. I write slowly, editing as I go. By the time I've muscled my way through a full set of lyrics, it's very close to the final version.

This elicited the following comment from one of Cinder Bridge's biggest fans, whom I fondly refer to as "Dad":

I wonder if you should try an experiment: force yourself to write lyrics without editing, i.e. free associate, just to see where it gets you. If it results in junk, so be it. It will probably seem like jumping out of airplane in the dark without a parachute, except that you don't get hurt when you hit ground.

Well, Dad (and everybody else who's told me the same thing), I have tried this experiment before, with mixed results.

Nine years ago, I met somebody who always free-associated his first drafts. MJ referred to it as the projectile-vomiting method of songwriting. He would feel some feeling very deeply. In an effort to express his deep feeling, words would violently propel themselves from his head onto a piece of paper. Later, he would excavate the results to find a line or two that he wanted to keep.

I envied MJ's process. It was faster than mine and considerably less tortured.

Fast-forward to 2002. MJ threw a party at his place. Around 5 or 6 in the morning, after the crowd had thinned, MJ asked me, "Do you want to learn to write like I do?"

I was game. MJ sat me down at his computer and told me to write whatever. I stared at the screen. For inspiration, he typed in a nonsense line or two for me to follow up on. I stared at the screen.

"Just let it out," said MJ, standing over my shoulder. "Let it pour out."

"Um, you saying that makes me feel more inhibited, not less."

So the experiment seemed a dismal failure. But maybe a day or two later, while riding my bike home, words crept into my head as I thought about what MJ had said and the way he had said it. I went to my computer when I got inside and started typing. It wasn't exactly the projectile-vomiting method, but I was able to jot down some lines without worrying too much about whether they were good. They went like this:

Rain Dance (v1.0)

I don't know what to say to you
I don't know what you want from me
Anymore

I do not understand why you
Feel the need to make me
Just like you

Pour it out, pour it out
You're looking for the rain to fall
Bring it out, take it down
You're looking for a storm

I don't know how long it will be
Before you thnk it's time to just
Give up

I can't decide if I should try to
Run away and hide
Before you do

Pour it out, pour it out
You're looking for the rain to fall
Primal scream, mindless dream
You're waiting for the storm

I wait for you to speak to me
Instruct me on the way I
Need to be

So sure you're right the time is right
Someday soon I'm going to
Fall in line

Pour it out, pour it out
Impatiently look at the sky
Primal scream, mindless dream
You're waiting for the storm

Do your rain dance once again
Gesture towards the sky and then
Realize it's just not coming down

This was obviously not close to a finished project, and I didn't have a vocal melody yet, but it seemed like a good start. MJ liked it. Later on, I attempted a slightly expanded second draft. I'm pretty sure I didn't spend a whole lot of time on this one either.

Rain Dance (v1.1)

I don't know what to say to you
I don't know what you want from me
Anymore

I've tried to tell you how I feel
You won't believe it's real
Unless I cry

I do not understand why you
Feel the need to make me
Just like you

You want a grander gesture
Some proof that I will never
Say goodbye

CHORUS
You tell me
Pour it out, pour it out
Let it all hang down
You want the
Primal scream, fever dream
You're waiting on a storm

The lines on my face don't reveal
Whatever it is that you're
Looking for

[My words are not enough for you]
And you don't trust that I will
Tell you truth

CHORUS
I wait for you to speak to me
Instruct me on the way I
Need to be

So sure you're right the time is right
Someday soon I'm going to
Fall in line

If you don't understand by now
Then maybe you do not
Deserve to know

CHORUS
You beg me
Pour it out, pour it out
Impatiently look at the sky
Primal scream, fever dream
Still waiting on the storm

Do your rain dance once again
Gesture toward the sky and then
Realize it's just not coming down

Fast-forward to around 2005. Lying in bed one morning, I half dreamed, half daydreamed what I would write if I were in school and some teacher tried to make me write poetry (I suck at poetry) as a means of self-expression:

You say you want a better look
But do you know
But do you know
The time it took
To show you what you see

I wrote a second stanza to go along with that when I was fully awake, then forgot about it.

Maybe a year later, Ron the Drummer and I were fooling around with a piano riff I'd improvised. I liked it quite a lot, but had no idea what lyrics could go with it. Then I recalled my forgotten two stanzas.

I think this is also when I realized I could connect those stanzas to the "Rain Dance" chorus, though I may have figured that out back when I wrote them. At any rate, I finally started working seriously to put it all together.

I did not free associate. After scavenging what I could from "Rain Dance" v1.0 and v1.1, I went about my usual way of doing things—writing a line or two at a time, punctuated by long periods of no progress, editing all the while.

Here is a scratch recording of the finished song:

Rain Dance
lyrics by Susan Wenger
music by Susan Wenger & Ron Amistadi

You say you want a better look
But do you know
But do you know
The time it took
To show you what you see

My words alone don't satisfy
You wish to find
The place behind
A hazy sky
The deeper part of me

CHORUS
And you say
Pour it out, pour it out
Let it all come down
You want the primal scream
Fever dream
You're waiting on a storm


I speak to you a gentle breeze
Provided by
A butterfly
Whose subtleties
You fail to understand

My careful lines, they leave you cold
You do not get
The pace I let
The tale unfold
Hourglass and sand

CHORUS
And you say
Pour it out, pour it out
Let it all come down
You want the primal scream
Fever dream
You're waiting on a storm


I feel your fists upon the door
Demand your take
And try to break
Me open for
The mystery I contain

I won't allow your will be done
Give up the hunt
If you don't want
My sunshine
Then you don't deserve the rain


CHORUS
And you say
Pour it out, pour it out
Let it all come down
You want the primal scream
Fever dream
You're waiting on a storm

Pour it out, pour it out
Let it all come down
You want the primal scream
Fever dream
You're waiting on a storm

Pour it out, pour it out
Let it all come down
You want the primal scream
Fever dream
You're waiting on a storm

Pour it out, pour it out
Let it all come down
You want the primal scream
Fever dream
You're waiting on a storm

Do your rain dance once again
Gesture toward the sky and then
Realize it's just not coming down

-----------------------------------------------------------------
Copyright 2006 Cinder Bridge. All rights reserved.

Assessment

On the one hand, this experiment proved that free associating doesn't help me write more quickly. Eventually I have to abandon careless jottings and revert back to ponderous, studied crafting.

On the other hand, I've noticed that "Rain Dance" is different from a lot of my other songs. It's more impressionistic, heavier on imagery—which, interestingly enough, describes much of MJ's work. I suspect that this has something to do with the way I got the initial ideas down.

Maybe I'll try again if I find myself stuck in a rut.

Adequacy

Most people who dispense advice about songwriting—about any kind of writing, really—tell you to silence your inner critic while you create your first draft. Early criticism paralyzes you, they say. Get something down first. Edit later.

I don't work that way. I can't work that way. The Editor will not be repressed.

To be honest, I don't mind so much. It used to annoy me that I wrote more slowly than everyone else, but now I'm just thankful that the Editor exists. If I try out a terrible line, it jumps in to tell me how bad it is, keeping me from running down a dead end. If I I think up something innovative, something that expresses my idea perfectly, I hear it crow Yes! Bravo!

The Editor's nemesis is adequacy.

See, not every syllable can be brilliant. Sometimes you really do just need filler, a few words to get you from point A to point B. Don't get me wrong—even those words need to be held to a certain standard. My Editor will still protect me from producing work that isn't good enough. It only becomes confused when I present it with something that's ... good enough.

It rhymes, the Editor muses. It feels good to sing and listen to. It expresses the basic idea we're trying to get across. But is this really the best we can do?

That's where I stand with my latest. I've filled in all the blanks. I could sing it in public, and people wouldn't point and laugh. But there are one or two spots where I wonder, is this good, or just good enough?

I can't decide whether to declare it finished.

... before the dawn

Two things made me happy today.

The first was a blog post from Vincent Racaniello. Dr. Racaniello was the virologist who told the Chicago Tribune that four new papers on XMRV were "probably the beginning of the end" of XMRV and ME/CFS." In other words, he believed the latest research showed that XMRV had nothing to do with ME/CFS. Bad news for anyone hoping that XMRV research could lead to treatment for an as-yet incurable disease that causes unimaginable suffering.

Anyway, he changed his mind. After reading the papers more carefully ...

My conclusion is that these four papers point out how identification of XMRV from human specimens can be complicated by contamination, but they do not mean that previous studies were compromised.

Will the media report Dr. Racaniello's retraction and apology as widely as they did his initial assessment? Probably not. But you'd better believe that people in the ME/CFS community will be quoting him when new articles about the papers are published.

The second thing to make me happy was an interview in Nevada Newsmakers with Annette Whittemore and Judy Mikovitz. Interviewer Sam Shad asked the right questions, and they gave intelligent, articulate replies. Moreover, their delivery was perfect. They managed to discuss all the politics around ME/CFS without coming off to the casual viewer as paranoid conspiracy theorists. Believe me, that's not easy to do.

A heartfelt thank you to everyone above. You all made Tuesday a much better day than Monday.

Onward!

Always darkest ...

While idly scrolling through Facebook Monday morning, I encountered a number of links like this:

Study finds contamination in virus link to fatigue | Reuters

Scientists conclude mouse virus does not cause ME | Society |
The Guardian

Chronic Fatigue Syndrome is not caused by XMRV |
Wellcome Trust Blog

This looked bad. The headlines implied that some new discovery had invalidated all research linking ME/CFS (myalgic encephalomyelitis, aka "chronic fatigue syndrome") to a retrovirus. That contamination in the laboratory had skewed the results. Was it time to throw up our hands and look elsewhere for answers and possible treatments?

Eh. Not exactly. Despite the definitive tone of those headlines, and despite the researchers' bold claims, the latest studies only show that contamination is possible with a particular kind of test. They didn't refute the positive studies, which used four different methods of detection.

From Amy Dockser Marcus of the Wall Street Journal:

Robert A. Smith, a research assistant professor at University of Washington in Seattle who wrote a commentary in Retrovirology summarizing the studies ... said he is unwilling to state that the reported link between XMRV and CFS or prostate cancer is no longer viable.

The papers focus on various problems associated with a specific kind of test used to detect XMRV but does not examine every method used to detect XMRV. Smith pointed out that some of the previous papers on prostate cancer found XMRV integrated into the patients’ DNA and "I can’t come up with a mechanism where there would be contamination there.”

(Full story here.)

In other news, today marks the winter solstice—the shortest day of the year.

After today, bit by bit, the days grow longer and lighter.

Window of critiquability

"If you do bring a song, it would be more constructive to do one that's still in progress, as opposed to a song that's finished and set in stone."

So advised local singer/songwriter Duncan Stitt, who was hosting an open mic in which audience members critiqued the performers' original songs. I understood what he meant. It's difficult to tinker with a tune you finished ages ago. On the other hand, my latest song-in-progress contained long passages with lyrics yet unwritten. I'd have to sing "na na na" through half of it. It's one thing to ask your listeners for feedback on what's there, another to ask them what I should write.

The problem is, I'm not one of those songwriters who dashes off a first draft, then goes back and carefully edits. I rewrite as I go. If a word or a line doesn't sound right, I keep chipping away at it until it does. By the time I've filled in all the words, I've pretty much got the song the way I want it.

The optimal time for me to offer something up for critique is when it's just about finished, but I'm unsatisfied with one or two lines. That's not a very large window to work with.

I either need to change the way I write or become more open to messing with older songs.

Why holiday music doesn't have to suck, but usually will anyway

OK. I wouldn't mind if they played this holiday song in supermarkets and shopping malls.

Too bad they never will.

Not so much because it's a Hanukkah song and not a Christmas song. I think the world is ready for a tiny bit of religious diversity. No, the main thing it has going against it is that it's new. Says Jerry McWreath, who works for the consulting company that first talked radio stations into changing to all-Christmas formats over the holidays:

"We have found that listeners tend to prefer a core of classics titles, such as 'Winter Wonderland,' 'Silver Bells' and 'Let It Snow,' performed by various artists, as opposed to going deeper with more titles. These songs take listeners back to their childhood and their own positive memories. (The chosen song titles) are based on the research that we see nationwide conducted among radio listeners."

(Full article at Observer-Reporter.com.)

So unless Matisyahu, the Hasidic reggae musician who wrote "Miracle," can go back and time and get airplay for the song around 1950, he's out of luck.

Oh, dreidel dreidel dreidel

Just two weeks and five days before the Christmas music goes away.

Yeah, I know. A lot of people like it. They like it so much that they'll tune in to lite rock stations that play it 24 hours a day. I can change the station if I hear "Holly Jolly Christmas" on the radio, but there's no avoiding it when I venture into a supermarket or a shopping mall.

The one thing I'm eternally grateful for? That this hasn't happened with Hanukkah. While I have very fond memories of lighting the menorah with my family, adding the "The Dreidel Song" to the mix of holiday tunes would not improve matters. Trust me.

A lot of non-Christians grumble about how the whole Western world assumes everybody celebrates Christmas when December rolls around. I'm just happy that our relatively small numbers have kept us safe from the advertisers who would use our music to get us to buy their stuff.

* * *

Apologies to those of you who actually know "The Dreidel Song" and can't get it out of your head because of this post. If it's any consolation, it's stuck in mine now too.

ME/CFS and the Red Cross

From a Red Cross press release:

At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS.

'bout time. Of course, people who know they have ME/CFS probably haven't been giving blood in droves. Even if they weren't worried about transmitting the disease, blood donation isn't going to be much of a priority for those who feel like crap all the time.

The big concern is the healthy 4–7 percent of the population infected with XMRV or other MLVs. The vast majority of them don't know they're infected, and the Red Cross isn't yet testing for MLVs the way they do for HIV.

That's the next step.

Famine bad. Snow good.

Remember "Do They Know It's Christmas" by Band Aid? Written to raise money for famine relief in Ethiopia? Big hit in 1984 and trotted out every year thereafter?

Turns out Bob Geldof—who cowrote the song with Midge Ure—absolutely hates it now.

From the Daily Telegraph:

"I am responsible for two of the worst songs in history," [Geldof] said.

"The other one is We Are The World. Any day soon, I will go to the supermarket, head to the meat counter and it will be playing. Every f ... ing Christmas."

I have to say, I liked "Do They Know It's Christmas" when it first came out, and not just because most other Christmas music sucked by comparison. The song was catchy, had a satisfying build-up, and was chock full of protesty goodness. What wasn't to like?

Then I started listening more closely to the lyrics. In particular:

And there won't be snow in Africa this Christmas time
The greatest gift they'll get this year is life

Even at the tender age of 15, this struck me as odd. Yes, there was much evil afoot in Ethiopia. Hundreds of thousands starving due to scarcity, indifference, bad government. But ... snow? A great injustice was being perpetrated on the Ethiopian people because there wouldn't be snow in Africa?

Still catchy and all, but that pretty much did it for my ability to take the song seriously.

Music gone missing

Last night, musing about approaches I could take with a new song, I sang an old one in my head. I wanted to make sure the new one didn't resemble the old one too closely.

All was well until I hit the end of the verse. I couldn't think the melody right. It sounded like part of the new song in my head, as if its melody had hijacked the old one. Repeated attempts yielded the same results.

Only later, when I'd not only stopped trying to remember but honestly forgot I'd forgotten, did the real melody float back to me.

* * *

This afternoon I read a short poem by Jannie Funster about finding her lucky hat. I found this amusing because, a few years ago, I wrote a whole song that was inspired by the real-life experience of losing a favorite hat and then finding it again. Apparently I'm not the only person who feels the deep emotional impact of such an event.

At any rate, I found I couldn't remember the words past the first line. No problem. All of my lyrics are stored and backed up. But then, after recovering the lyrics, I realized I couldn't recall the middle part of the instrumental break. That's a bigger problem. I never recorded the song or wrote the piano part down.

I won't panic. As happened last night, music tends to find its way back to you as long as you don't force it. Still, there's a lesson here. With 63 songs and counting, I really need to start recording all of our stuff.

Siren song

One nice thing about visiting the parental homestead is that I've had a little more time to practice. They own a Steinway grand, inherited from my grandparents, and that serves my purposes very nicely.

Just one thing makes practicing feel awkward: the vocal warmups.

It's hard to explain without a sound sample, which I don't have and would prefer not to provide. What you're supposed to do is sing the vowel "E." You start as low as you can and go up—not singing a scale, but hitting every pitch there is in between the usual notes. You go as high as you can without tripping over your register break (the pitch between your chest voice and head voice), then go back down the same way. It sounds kind of like an ambulance siren going by.

eeeeeeeEEEEEEEEEEEEEeeeeeeeeEEEEEEEEEEEEEEeeeeeeeeeeeee

This is an excellent warmup. This is also not something I want other people, like, say, my parents, to hear.

So far I've been doing them just after my morning shower. The hair dryer drowns me out. I hope.

Junk unmolested so far

Greetings from Highland Park, Illinois. I spent most of yesterday on a plane and am happy to report that nobody tried to see me nekkid or grope me. Tucson International isn't on the TSA's list of airports to get the scanners. Midway Airport in Chicago doesn't have them yet.

In celebration, I leave you with this (hat tip @New Research Findings Two):

Hi ...

I'm sorry. I suck. Life has been sort of chaotic lately and it's interfered with my ability to update this little blog. The problem isn't that I haven't had time to write. The problem is that the non-music elements of my existence have been crowding out the music parts, leaving me little to write about.

At times like these I envy those artists who have dedicated themselves to their art full-time. How much easier would it be if I didn't have the distraction of an unrelated day job? Why haven't I taken that plunge?

Oh yeah. I like to eat.

Seriously, in this economy I can't complain that I've got a paying job. I certainly can't complain that I have a paying job I like.

But I am going to make it my goal to do something worth writing about. Stay tuned.

No sibling rivalry for sister stations

Lately I've been hearing an odd promo for the local top-40 station. Nothing special, just someone saying that if you want to listen to today's new music, you should try 93.7 KRQ.

The odd part is that the promo appears on 92.9 "The Mountain."

Tonight I finally looked it up. Turns out they're sister stations, both owned by Clear Channel. So they're not actually competitors.

Still. Weird. Even deep into this age of deregulation and consolidation, you'd think Clear Channel would at least pretend they're not on the verge of becoming a total monopoly.

Notice me, dammit

Alexa Ray Joel, daughter of Billy Joel, has a new song out. Well, newish. New to me because I'm oblivious to pop culture. (Hat tip @Robyn S.)

My first reaction: Awww, cute. Not really my favorite genre of music, but she does a good job selling it.

My second reaction: Geez, I wish my dad were a famous musician guy so I could get instant exposure for my music. Must be nice.

Then I stumbled on Alexa Ray Joel's blog and read this:

I’ve decided to NEVER google myself again- EVER!! Those bloggers are just way too hostile and cruel on there- OUCH!!!! I can’t help but wonder: “why do they feel so much hatred towards me?”, “why do they want to believe I’m just some trust-fund baby with no voice or talent of my own?”, “why do they feel the need to call me ‘homely’” and constantly compare me to my mother’s looks, when I have a completely different look and vibe than her?. I hope one day they realize that I do NOT use my parent’s connections AT ALL, and that I got the ‘Prell-Gig’ completely on my own, and I’m making this record on my own terms without “Daddy’s Help”. And that I am a real and genuine girl who wouldn’t want to hurt a fly, I just want to spread kindness, authenticity, and good music…. hey, and I have feelings too!!

I have no problem believing that ARJ didn't ask either of her famous parents to make calls and open doors for her. On the other hand, having the name Alexa Ray Joel probably helped her get noticed. She might not have risen to the top of a pile containing thousands of submissions if she'd used the name Edith Hinkleman.

That's not a criticism, mind you. It doesn't mean she's less deserving than others trying to make it in her genre. She's obviously got talent. She's just not necessarily more deserving than others with talent. And as someone in a band that's fighting for recognition—any recognition—it's hard not to feel a little envious.

Which leads to an interesting question. Would you rather languish in obscurity with little hope of breaking out? Or would you rather everybody assume that you only achieved fame because you have famous parents?

Unintelligible

Ron the Drummer, a veteran of many pre-Internet bands, has recounted how tough it was to cover songs back in the day. If you wanted accurate lyrics, you had to buy the album. If the lyrics didn't come with the album, you had to transcribe them yourself, which meant listening over and over again until you got them right—hopefully.

I was reminded of this tonight when I attempted to look up the lyrics to "Of Thee I Sing" by Leon Russell.

I love this song. It is joyful and exuberant and catchy and always makes me want to sing along. Except I can't, because the vast majority of the words are unintelligible. So tonight, I finally got around to tracking them down. I fired up Google, entered "of thee i sing" lyrics leon russell, and found ...

... nothing.

Well, not exactly nothing. I did come across abridged lyrics on a message board, but I have no way of knowing whether the guy who posted got them right. Maybe he has inside knowledge. Maybe he's just guessing.

Hell, the one line I thought I could understand was "Middle of the night" at the beginning of the chorus, and according to the poster, it's "Beauty like a knife." Listening again, I still can't tell which one of us is right.

I feel oddly betrayed. I've become used to the ability to find this stuff whenever I want, and I've developed a sense of entitlement about it. Where are my lyrics? Give me my lyrics!

The Bee Gees and Pink Floyd: Together at last

Oh. My. God. You have to drop everything you're doing and watch this right now.

You wouldn't think that a mashup of "Stayin' Alive" and "Another Brick in the Wall Part 2" was possible, would you. Sick and twisted and brilliant.

I wonder if Wax Audio obtained permission from the artists to do this thing. If not, I really hope lawyers don't intervene. I don't want to live in a world where this doesn't count as fair use.

Hat tip: @Larry Denneau.

Officially yours

While flipping through radio stations this weekend, I happened upon a DJ declaring 94.9 MIX FM to be Tucson's official at-work station.

Which got me thinking. How does one become the official at-work station for a particular city? Is there an authority that bestows that honor? Does somebody hold a contest? Are actual Neilsen ratings involved? Or is this one of those things people can make up without running afoul of truth-in-advertising laws because the claim is meaningless anyway?

Probably the latter.

On an unrelated note, I am happy to report that as of today, Cinder Bridge is North America's official listen-while-you-do-dishes-and-dance-around-the-kitchen-like-an-idiot band. We are very proud.

Cantatrix ex machina

The good news: as a singer, there's still little chance that my job will be outsourced to India.

The bad news: I am in danger of being replaced by a machine.

A really CREEPY machine.

Vote WPI!

The American Express Members Project is donating a total of $1 million to five charities. If you'd like to nominate the Whittemore Peterson Institute as one of the recipients, go here:

www.takepart.com/membersproject

Voting is open to everyone!

My fingers are crossed. The Whittemore Peterson Institute is the best hope I've seen so far for people with neglected neuroimmune diseases like ME/CFS, fibromyalgia, and Gulf War syndrome. They need all the funding they can get.

XMRV: One year on

One year ago today, we saw the publication of the Science paper linking ME/CFS to a retrovirus called XMRV.

Since then there have been a bunch of studies that failed to replicate the Whittemore Peterson Institute's results—none of which were true replication studies. Since then we have seen one study that linked ME/CFS not with XMRV, but other MLVs.

Since then, the Whittemore Peterson Institute opened its new facility at the University of Nevada School of Medicine.

The pace is picking up. Progress makes me hopeful.

It also makes me impatient.

Donate.

Tuskegee tactics vs. the cohort problem

Let's try this again.

In my last post, I responded to Hillary Johnson's essay likening of the CDC's mishandling of ME/CFS to the infamous Tuskegee syphilis experiment. For those unfamiliar with the history, Tuskegee medical researchers studied almost 400 black men with syphilis, didn't tell their subjects that they were infected, and didn't treat them for it—all so they could study the natural course of the disease.

I said that even with all the nasty politics surrounding ME/CFS, it was easier for me to believe that the CDC was simply clueless and biased than to believe they were pulling another Tuskegee.

A commenter felt my skepticism was naive, saying that I must be unfamiliar with the CDC's history. I'm not. But upon rereading my post, I realize that I came across as more of an apologist than I intended.

So, just a little bit of the history.

Back in 1996, a congressional investigation revealed that the Centers for Disease Control and Prevention had diverted funds meant for ME/CFS to other diseases.

Since then, the CDC has diluted its definition for what it considers "chronic fatigue syndrome"—it includes many patients who are likely suffering from depression or some other disease, but not ME/CFS. Using the diluted definition, they have focused almost exclusively on behavioral treatments. And that's where the problems begin.

They'll test the effects of cognitive behavioral therapy and graded exercise therapy, using subjects that may or may not actually have ME/CFS.

The real ME/CFS patients will experience post-exertional morbidity as a result of the graded exercise therapy, and they'll be much more likely than the others to drop out of the study.

The researchers won't count the dropouts when calculating their results.

They have continued to skew their results in this fashion despite criticism from other ME/CFS researchers.

Why? Maybe they really are just biased toward thinking that ME/CFS is a psychological disorder instead of a neuroimmune disease. I'm not ruling the possibility out. Not entirely. But if another congressional investigation revealed something more nefarious—influence from insurance companies, for instance—let's just say I wouldn't fall over from the shock.

So why am I skeptical that they're pulling another Tuskegee?

The facts don't fit.

We're horrified by the Tuskegee study today because the scientists treated human beings like lab rats. Because they let patients infect other human beings, suffer, and die in the name of science.

What they didn't do was study patients who had, say, schizophrenia, and lump them in with the syphilis patients.

If the CDC wanted to study the natural course of ME/CFS in the same way that Tuskegee did for syphilis, they'd want to actually study people with ME/CFS.

We wouldn't have the cohort problem.

Tuskegee #3?

Interesting essay by Hillary Johnson up on Osler's Web about the discovery of a "Tuskegee 2":

Inmates in a Guatemalan penitentiary, patients in insane asylums and soldiers in an army barracks were deliberately infected with syphilis or gonorrhea. According to [Susan] Reverby, infected prostitutes were recruited to infect Guatemalan prisoners. Reverby reported that ultimately 696 men and women were infected. According to records, the point of the project was to study the efficacy of penicillin, but Reverby reported that not everyone was cured.

Reverby linked the Guatemalan experiment of the 1940s with the notorious Tuskegee syphilis experiment that began in 1932 in Alabama. In this widely chronicled event, scientists at what would become the Centers for Disease Control identified 400 impoverished black men in Tuskegee with syphilis and denied them and their contacts treatment for the next four decades, purportedly to study the "natural history" of syphilis. In spite of the fact that treatment became available, and that the natural history of syphilis was already well-known, the CDC allowed blacks in Tuskegee to grow ill and to infect their spouses and even infants, who contracted the disease at birth. The Guatemalan debacle was headed by John Cutler, a Public Health Service doctor who was also involved in the Tuskegee experiment.

Johnson contemplates the possibility that the CDC has been treating ME/CFS in a similar fashion—deliberately allowing an infectious disease to spread so they could study its course.

Even with all the nasty politics surrounding ME/CFS, this speculation strikes me as a little paranoid. I find it easier to believe that the CDC is simply biased, and that its bias leads it to do very bad science.

The sad thing? If you're an ME/CFS patient, the world looks the same to you either way.

Good days, bad days, and invisibility

An invisible illness is one that isn't readily apparent to the people who don't have it. Two factors contribute to a disease's invisibility:

• No obvious signs. Sufferers don't use a wheelchair or crutches, don't exhibit hideous rashes or scarring, and generally don't "look sick."
  
  
• Symptoms go underground. Due to the illness, sufferers often can't leave the house. When they do, it's on a relatively good day, when they're feeling better. The friends and family who see them on those good days assume, wrongly, that the sick person always looks and functions that well.

As National Invisible Chronic Illness Awareness Week draws to a close, I'm posting "Good Days," a song I wrote about dealing with the misconceptions attached to a good days/bad days disease. Ron the Drummer and I recorded this live in his living room. You may need to turn the volume all the way up if you're listening on tiny laptop speakers.

Lyrics are below. Enjoy!




GOOD DAYS

Lyrics by Susan Wenger
Music by Susan Wenger & Ron Amistadi

When I got up late this morning
I could sense a change
Felt a little stronger
Could push a little longer
Accomplish something more

So I got dressed and fed myself
And hopped into the car
Drove it all the way down
To the nearest grocery store

You say I'm wasting my potential
Moving through this life too slow
You only see me on my good days
How are you to know

I've been losing so much daylight
Lying on the bed
Half awake and half asleep
Half alive, half dead

But now I walk among you all
Just breathing in the air
Grinning like a madman
On a double-doggie dare

You think I'm addicted to the drama
Playing all of this for show
You only see my on my good days
How are you to know


I could almost make believe
This feeling's here to stay
But I know from experience
My body's gonna pay

Well, none of your equations
Ever calculate the price
And I do not remember
Asking you for your advice

Today is gonna go down easy
Take it nice and take it slow
I am having me a good day
That's all you need to know

The artist versus the art

Cause out on the edge of darkness,
there rides a peace train
Oh peace train take this country,
come take me home again

—Cat Stevens, "Peace Train"

Salman Rushdie, indeed any writer who abuses the prophet or indeed any prophet under Islamic law, the sentence for that is actually death.

—Yusuf Islam, formerly known as Cat Stevens

Not long ago, a friend of mine proclaimed that he had no interest in listening to Sammy Hagar due to the man's abhorrent political beliefs. Apparently Hagar has stated something to the effect that he wouldn't kill someone who was threatening to murder his family, because nobody has the right to take anybody else's life under any circumstances.

(A Google search didn't turn up anything on this, so apologies to Hagar if I completely misrepresented whatever he actually believes.)

I thought back to that conversation today as I was choosing music to listen to while cooking. A scroll through the iPod brought me to Cake, Captain Beyond, Carole King, Cat Stevens ...

Cat Stevens. I hadn't heard him in a while. He'd fit my mood perfectly.

Hmm.

I hesitated. Pushed past the reservations. Selected a track from Mona Bone Jakon and pressed play.

Back in 1988, when Cat Stevens/Yusuf Islam made his infamous remarks about Salman Rushdie, I decided not to boycott his music. After all, I argued, he wrote a lot of it before he even adopted those beliefs. Besides, his songs were innocent. His songs didn't advocate killing people who disagreed with you.

Nevertheless, ever since then, I've felt a small amount of guilt when listening to him. My reasons are logical enough, but my motives aren't pure. In the end, I listen because his music brings me pleasure. I don't want to give it up.

And now that I write songs myself, I have another selfish motive: I don't want people to lose interest in my work if they become disillusioned with me.

For instance. Of everything we've put out there, the song that's probably garnered the most appreciation is "Everybody Knows About Me," about someone living with undiagnosed ME/CFS. In particular, people who have the disease themselves are happy that somebody wanted to stand up for them. It offers comfort and vindication.

I'm proud that I wrote "Everybody Knows About Me." I'm proud that other people have found solace in it. But day to day, just going about my life, I could never live up to the promise of that song. I'm not full of understanding and empathy every second of every waking hour.

In a sense, though, that's one of the reasons I want to write. My songs are self-contained pieces of expression that never change when I say something stupid or let somebody down. Once crafted, they exist outside of me.

So, I continue to groove on Cat Stevens. I continue to write.

I try not to feel like too much of a hypocrite.

Full transcript of the XMRV conference

... is here.

Big thanks to XMRV Global Action for doing this. The transcript is incredibly handy for those of us who aren't medical experts, and want to revisit segments to better understand them.

You seek what you want to seek

Day #2 of the XMRV Conference has come and gone. The good news, if you missed the live webcast, is that it's already up on YouTube. Definitely worth the watch if you have a keen interest in ME/CFS.

Mindy Kitei of CFS Central was there, and she asked the panel a couple of questions. Unfortunately, her second question somehow didn't make it onto the replay I've linked to. Fortunately, Lannie in the Lymelight has the missing clip (scroll down for the video). Mindy begins at 2:45:

My question is about the negative studies for CFS. And I understand, Dr. Coffin, you say, we still don't know. But having read these, and having reported on this disease since 1994, the negative studies—many of these patients in CFS do not have CFS in these studies. They have depression. And Dr. Leonard Jason has done studies on this. That the "empiric definition" that the CDC uses—38 percent are depressed. So you're not even dealing with a cohort that has the disease.

And I think that that's really important. Instead of saying that we don't know yet—which, we don't know yet. But there are patients who have been desperate for twenty, thirty, and forty years. And I understand, it's premature to do these drug trials, but we also have to call a spade a spade. And when you have a study, for instance, by the CDC, and they don't find it, OK. And then they want the RKI in Germany to confirm. RKI in Germany didn't find it in prostate cancer. Why not, Mr. Switzer, why not go to the Cleveland Clinic, who did find XMRV? You know, you seek what you want to seek. And I think it's important that we really see things as they are and not how we want them to be.

At this point she was cut off by one of the panelists, who insisted that nobody had any interest in deliberately obtaining negative results, and that they weren't there to talk about the CDC or about policy in Britain.

Which was kind of funny, given that she hadn't mentioned policy in Britain.

Hat tip to @OtisQuila for directing me to the clip.

Tune into CFS Central for updates.

ME/CFS happenings

Lots going on this week.

A new study found abnormalities in the white blood cells of kids with ME/CFS, suggesting they've been fighting off infection.

Professor Jill Belch, an expert in vascular medicine at Ninewells hospital in Dundee who led the latest research project, said: "What we've found are blood changes that suggest chronic inflammation.

"This is important because it's showing an abnormality that we might be able to devise a treatment for, but it's also important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."

Meanwhile, the Whittemore Peterson Institute and Cerus Corporation presented data today at the 1st International Workshop on XMRV demonstrating the efficacy of Cerus's INTERCEPT Blood System. This is good news for the blood supply—the INTERCEPT Blood System inactivates MLV-related viruses in donated blood.

Speaking of the 1st International Workshop on XMRV ... Day two, Wednesday, September 8, is apparently when they focus on ME/CFS. You can watch the event live, starting at 5:15 p.m. EST.

So, long time ...

Wow, I haven't posted to this thing since Tuesday. I suck.

I haven't meant to neglect the blog ... or you. It's just that there's nothing new to report. Ron the Drummer and I are still plugging away in preparation for the new album. The ME/CFS community is still grinning at the recent scientific progress. Everything's chugging along. But no stories I haven't told you already.

We'll endeavor to do something really noteworthy at today's rehearsal.

Music on the sidebar!

After two years of posting here, I've finally figured out how to put our tunes on the sidebar. What a concept—music on a band blog!

If you glance at the top right, you'll see a player for a bunch of Cinder Bridge songs. "Everybody Knows About Me," about somebody living with undiagnosed ME/CFS, is downloadable. The rest are streaming only, and available for purchase at CD Baby.

Hat tip to Jeff Shattuck of Cerebellum Blues for hooking me up with ReverbNation, which provided the handy player widget.

ME/CFS and the blood supply

With evidence of a link between ME/CFS and a family of retroviruses, there's been talk of potential contamination to the blood supply. 7 percent of the healthy controls in the recent Alter study tested positive for an MLV (murine leukemia virus). All of them were blood donors.

Remember why this kind of thing is a big deal?

Anyway, Canada, New Zealand, and the UK have already banned ME/CFS patients from donating blood (though the UK is saying it's to protect the health of the donors). The United States hasn't followed suit, at least not yet. From the Associated Press:

No one knows how people become infected, but Alter said a major study is under way to see if there's any evidence of transmission through blood.

In the meantime, federal regulations require that blood donors be in good health, said FDA's Dr. Hira Nakhasi.

So apparently we aren't worried about those healthy donors who have MLVs yet.

ME/CFS in the media: M-O-U-S-E

Journalists writing about ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) generally strive to appear fair, balanced, and neutral. But when you read a lot of articles about "chronic fatigue syndrome" (which is what they usually call it) you start to notice subtle shifts in tone.

A more skeptical piece will note that many physicians consider ME/CFS to be psychological in nature. In and of itself this is a perfectly true and neutral statement: many physicians DO think it's all in patients' heads. Unfortunately, the writers almost never question this information, leaving the reader to believe that it's a matter of opnion—that there's no scientific evidence to prove those doctors wrong.

Other articles will mention that lots of people consider the disease controversial, but that now, in light of [insert most recent scientific discovery here], it looks like ME/CFS is actually a real thing! While this is better, such articles usually fail to mention all the previous research which also indicated that ME/CFS is actually a real thing.

With the publication (finally!) of the Alter et al paper, the language is becoming friendlier. Take this exposition from the New York Times:

Chronic fatigue syndrome, estimated to afflict at least one million Americans, has no known cause and no accepted diagnostic tests, although patients show signs of immunological, neurological and endocrinological abnormalities. Besides profound exhaustion, symptoms include sleep disorders, cognitive problems, muscle and joint pain, sore throat and headaches.

Note the lack of the word "psychological." Note how the language implies that the failure to find a cause is merely a failure to find a cause, not a lack of a real effect.

And what about the visuals?

Traditionally, almost every time stock art has accompanied an article about ME/CFS, it's been a person (usually female) looking very sad and kind of tired, often with her head in her hands. Because people with "chronic fatigue syndrome" are really tired, and very sad about that ... right?

OK, I realize we can't blame the journalists too much for this one. They need some kind of picture to depict a disease with the name "fatigue" in it, and maybe that's as creative as they can be on tight deadlines. It just gets on my nerves.

The tired-sad-person photo hasn't vanished completely. However, with the release of a study about how murine leukemia viruses (MLVs) are linked to ME/CFS, papers now have a brand new go-to image!

Photo by animalphotos.info

It's a mouse virus! Get me a picture of a cute mouse!

I'm going to call this an improvement.

Anniversary of a leap of faith

Nine years ago today I bought my first keyboard: a brand spankin' new Roland RD700.

As big purchases go, the Roland wasn't terribly practical. I already had a real upright piano to practice on. I wasn't going to use the other synthesized, non-piano voices for much except occasionally goof around with them. And the thing was expensive—$1,600 for the keyboard itself, another $400+ for the amp, stand, and other equipment.

The big draw? I could cart a keyboard around to gigs.

I wasn't in a band. There were no gigs. I just had a vague notion that I wanted there to be.

In retrospect, buying the Roland was out of character. I usually like to have a concrete destination in mind before I invest in whatever I'll need to reach it. But somehow, this time, I managed to overcome my reservations about the cost, my fears that the keyboard would end up gathering dust. I decided it was worth doing, and I did it.

Eventually there was a band. Eventually there were gigs. Demos. An album.

Sometimes you have to make the investment before you know exactly what you're investing in.

Now You See Us

A little over a year ago, I wrote an ME/CFS protest song called "Now You See Us." It's full of righteous indignation, but also giddy and optimistic. I'm posting it here tonight in celebration of the long-awaited release of the Alter paper.

(This is a low-res home recording, so if you're listening on itty bitty laptop speakers, you may need to crank the volume up to max.)

This goes out to everyone at the Whittemore Peterson Institute for getting the ball rolling. It also goes out to Alter et al for discovering another important piece to the puzzle, and for dealing with a lot of political crap they likely never expected. And to all of us, for surviving the wait.

If you like it, share it with anyone else you think will like it too! Lyrics are below.




NOW YOU SEE US

Lyrics by Susan Wenger
Music by Susan Wenger & Ron Amistadi

Day they came
Did their worst
Felt like I might die of thirst
Not a drop of water to be found
Seasons pass
Years go by
Never knew the reason why
They always kick you hardest when you're down

Chase the money trail
And you begin to realize
There's shady people cleaning out the store

CHORUS
Someone's got to keep the faith
Someone's got to hold the line
I can build a mighty fortress
With the power of my mind
I'll do anything it takes
Gonna take back what is mine
And there's no stopping us this time


Alone we are divisible
Silent and invisible
Without the strength to get a message through
Find each other one by one
Get together
Get it done
Keep each other going 'til we do

They can call us crazy
See how much time that buys
But we will not believe them anymore

CHORUS
Someone's got to keep the faith
Someone's got to hold the line
I can build a bridge between us
With the power of my mind
I'll do anything it takes
Gonna take back what is mine, mine, mine
And there's no stopping us this time


Results of their analysis
Hysterical paralysis
The more things change the more they stay the same
But closer now
To the truth
And they cannot deny the proof
By trying to call it by a different name

CHORUS
Someone's got to keep the faith
Someone's got to hold the line
I can build a better future
With the power of my mind
I'll do anything it takes
Gonna take back what is mine, mine, mine

And you and me will be just fine

---------------------------------------------------------------
Copyright 2009 Cinder Bridge. All rights reserved.

Alter paper released!

It's here.

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

The whooshing sound you've been hearing all day? That would be the collective exhales of everybody in the ME/CFS community. The paper is out, and the results are positive.

Highlights:

• Alter et al did NOT find XMRV (xenotropic murine leukemia virus-related virus) in either the ME/CFS subjects or the healthy controls. However ...
  
  
• XMRV is a member of the MLV (murine leukemia virus) family, and they did find other MLV-related viruses in 87 percent of the ME/CFS subjects, as compared to 7 percent of the healthy controls.

The Whittemore Peterson Institute, which found a XMRV-ME/CFS link back in October 2009, is psyched.

For a more in-depth review of the findings, the implications, and the backstory, jump over to CFS Central.

Onward!

Alter press embargo ends in 3 ... 2 ... 1 ...

At 3:01 p.m. EDT (about 10 minutes from now at this writing), there will be a teleconference by experts from the FDA, NIH, and CDC to answer questions about the Alter et al paper that was put on hold in June.

Reporters should call 1-888-677-4212 and enter passcode 9258555. For those unable to participate, the briefing will be available on replay approximately two hours after briefing concludes. For replay, dial 1-866-373-4990 and enter passcode 5711. [Emphasis mine.]

Full press release available at Dancing with the Sandman.

I don't hold out much hope that mainstream media reporters will ask the hard questions, like why this paper was on hold for so long when the CDC's negative results were published relatively quickly. But this is still good news. Fingers crossed.

Mysteries of the rhyming dictionary

I am one frickin' line away from finishing my latest song. The worst part isn't being stuck there. The worst part is that I'm not finding a line that ends with a suitable rhyme for "you."

D'you know how many words rhyme with "you"? Lots. An embarrassment of riches. Any songwriter who can't fill a rhymes-with-you line with something creative and brilliant isn't worthy of the name.

As I sometimes do in times of trouble, I turned tonight to the handy rhyming dictionary Ron the Drummer gave me for my birthday several years ago. Perhaps revisiting the available words would provide the poke I needed to get moving again.

I looked under do and found the following:

accrue, ado, bamboo, blew, boo, boohoo, brew, caribou, cashew, drew, flew, flue, glue, gnu, goo, grew, Hindu, hitherto, hullabaloo, igloo, impromptu, into, issue, Kalamazoo, kangaroo, kazoo, kickapoo, misconstrue, moo, outdo, overdo, overthrew, peekaboo, Peru, poo, rendezvous, screw, shampoo, shoe, shoo, shrew, Sioux, slew, slue, stew, taboo, tattoo, threw, through, tissue, to, too, true, two, undo, voodoo, wahoo, well-to-do, who, withdrew, woo, yahoo, zoo, Zulu (see you)

I puzzled at the instructions to see you at the end. Generally this dictionary only does that when all the rhymes are listed under the other word.

I flipped to you and found this:

adieu, anew, avenue, barbecue, bayou, chew, choo-choo, cue, curfew, debut, dew, due, ensue, ewe, few, guru, honeydew, hue, I.O.U., imbue, ingenue, interview, Jew, knew, lieu, new, Nehru, overdue, pee-ewe, pew, preview, pursue, renew, residue, revenue, review, spew, subdue, sue, undue, view, yew (see do)

If you gave both entries more than a cursory glance, you may have noticed that these are completely nonoverlapping sets. Any word that appears in the first list doesn't appear in the second.

Why?

Something else I just now noticed: neither list includes blue. How is that kickapoo has a presence here, but a basic, oft-used word like blue didn't make the cut?

Who isn't there either.

This bears further investigation.

A retrovirus by any other name

According to Dr. Joe Burrascano, participants at the first Whittemore Peterson Institute scientific symposium have proposed a new name for XMRV, the retrovirus that may cause ME/CFS.

XMRV stands for xenotropic murine leukemia virus-related virus. Says Dr. Burrascano:

This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection). Because of all of this, and because of the desire to begin on the right track:

• The new name of the virus is HGRV - Human Gamma Retro Virus.
  
  
• The illness caused by this infection is named HGRAD - Human Gamma Retrovirus Associated Disease.

Source: ProHealth

As an advocate, this seems like hopeful news. Longtime ME/CFS researcher Nancy Klimas once gave a talk in which she said she expected the name "XMRV" to change as we learned more about the retrovirus. So a new name reflecting a better understanding feels like progress.

As a songwriter, someone who spends a great deal of time contemplating the shapes of words, I confess that I'm a little let down by the new names. HGRV? Sounds like a cable company and doesn't roll off the tongue. HGRAD? Also awkward to say. (I'm guessing everyone will default to pronouncing it "aich-grad." Others have suggested "hagrid," which rolls better but doesn't make a lot of sense.)

Oh well. I realize it's not a scientist's job to make stuff sound good, and that they must value accuracy over all things. With any luck, the progress this represents will far outweigh any of my petty concerns over poetics.

The Whittemore Peterson Institute finds a home

The Center for Molecular Medicine at the University of Nevada, Reno, opened today. It will house, among other things, the headquarters of the Whittemore Peterson Institute for Neuro-Immune Disease and its research clinic.

"Not only does it have the technical infrastructure in terms of cold rooms and digitalize support required to do first-rate research, but it’s built on the concept of laboratories without walls,” said [Sanford] Barsky, who also is director of cancer biology at the Whittemore Peterson Institute. “That allows a number of investigators studying different diseases to be housed in the same work area and it maximizes interaction and collaboration. And when it comes to research, everyone is a winner.”

Full story here.

You can donate to the Whittemore Peterson Institute here.

Best That I Can Do

Hey, remember that song I was writing a few months ago? The one I was trying to find a rhyme for? The one where I couldn't decide whether there should be a bridge?

I finished "Best That I Can Do" back in June. Ron the Drummer and I recorded it in his living room a few weeks ago. And I figured out how to post songs on the blog today. Yip!

For anyone who was remotely curious as to how "Best That I Can Do" turned out, here it is. It doubles as an apology for my pathetically low posting output of late and goes out to anyone who's been feeling a little overextended. Lyrics are below.

Again, this is a low-res home recording, so if you're listening on dinky computer speakers, you may have to turn the volume all the way up to hear anything.




BEST THAT I CAN DO

Lyrics by Susan Wenger
Music by Susan Wenger & Ron Amistadi

Clock alarm declares a brand new morning
Hazy plans are forming
How shall I use the day
I'm staring down the frontiers yet uncharted
Projects barely started
The dues I have to pay

Make a list of what I must accomplish
Lacking any knowledge
Of how to get it done
All the tiny pieces of the mission
Are fighting for position
Then merging into one

Well it's built to last
And it's piling on so fast
I cannot slow it down

Have to cut some corners
More than just a few
Some days that's the best that I can do


Crossed off half the tasks on my to-do list
But I'm not getting through this
The day is almost gone
I keep thinking just a little longer
But it keeps coming stronger
On and on and on

Still I hear your plea
Everything depends on me
I cannot let you down

Making up the answers
When I haven't got a clue
Some days that's the best that I can do


Lock the bathroom door
Turn on the faucet
Nothing's gonna cross it
This barrier I made
Flowing drowns out every sound around me
Washes out the memory
Of dues I haven't paid

Well, the water's fine
Though I cannot spare the time
To wind this body down

Something got neglected
And I think that it was you
Some days that's the best that I can do

© 2010 Cinder Bridge. All rights reserved.

* * *

Got feedback? Glowing praise? Constructive criticism? Destructive criticism? Comments are thataway!

Stupidity alerts

A few years ago, I read about a cool way to keep abreast of medical advancements for ME/CFS: subscribe to Google Alerts. Here's how it works. You give the site a search query—in this case "chronic fatigue" treatment. The Google Alert will then automatically search for new results and e-mail them to you on a regular basis.

These days, my daily alert is useless as far as hard information goes. I generally learn about important developments from the ME community before Google does its thing. I've kept it running, though, for a couple of reasons. First, it's a pretty good way to keep tabs on how the media reports the disease. Second, if an article says something stupid, I can leave a comment to let other readers know why it's stupid.

Usually the article in question talks about how very useful cognitive behavioral therapy and graded exercise therapy are. (Both are promoted by psychiatrists who argue that ME/CFS is an "illness belief" rather than a real disease.) For instance, on Thursday I got an alert for an article—really an informercial—about how patients should use exercise bikes to help them get better.

I left the following comment:

Graded exercise therapy is a very bad idea for people with myalgic encephalomyelitis (aka “chronic fatigue syndrome”). ME patients start out with a limited amount of energy each day. They deplete that energy when they feed themselves, brush their teeth, or walk to the bathroom. Telling them to spend energy on something that doesn’t help them meet their basic needs — using an exercise bike, for instance — doesn’t make any sense.

I notice that at this writing, the powers that be haven't seen fit to make my comment public. Perhaps they're just really busy.

In press

According to CFS Central, the Alter paper is in press. That is, it's being printed and will soon be published in Proceedings of the National Academy of Sciences.

I don't know how soon "soon" is. I don't know if the paper has been changed in any way since the powers that be put it on hold. I won't exhale until I actually see the damn thing in print.

Still, it's refreshing to get any news about this at all. I'm tired of waiting.

I know I'm not the only one.

Waiting

Apologies for the lack of posts this week. There hasn't been a whole lot going on. Just waiting.

Last Saturday we sent a bunch of songs to our producer. He will listen to them and give us feedback, telling us which ones he thinks are good enough for the upcoming album. But we gave him a lot to listen to, and he has a gazillion other things going on, so it will take a while to hear back.

I'm trying not to think about it until then.

On the ME/CFS front, we're still waiting for the release of the FDA/NIH paper, the one that supposedly confirmed a link between XMRV and ME/CFS. It's been weeks since we've heard it would be published within weeks.

Here's hoping there will be something to report on soon—something that is actually happening.

Here's hoping it's good.

Preproduction

For the past few weeks, Ron the Drummer and I have been making scratch recordings of some songs that we think might work for our new album. Today we sent the last of them off to our producer. He will listen and tell us which ones he thinks are good enough for the album.

Oh, did I mention that we're making a new album?

Yeah.

Though this has been in the works for a while, I've been reluctant to say anything here. I don't want to jinx it. A small, irrational part of me really believes that if I announce it publicly, everything will fall apart.

But it's time. I initially told myself that I'd go public when we started the evaluation recordings. Then, when the recordings were underway, I decided I'd post after we started sending them to the producer.

He has all of them now. So: we're making a new album.

Did I mention that we're making a new album?

The perils of background music

New research on music and cognition from the University of Wales Institute! Psychologists have discovered that listening to music may not help you study. From CNN Health:

They instructed 25 participants between ages 18 and 30 try to memorize, and later recall, a list of letters in order ... Participants were tested under various listening conditions: quiet, music that they'd said they liked, music that they'd said they didn't like, a voice repeating the number three, and a voice reciting random single-digit numbers.

The study found that participants performed worst while listening to music, regardless of whether they liked that music, and to the speech of random numbers.

I have to know. Did these guys expect a different finding?

My guess is that nobody puts on study music to help them study. The point is to make an annoying or tedious task a little more pleasant. That's all. They aren't expecting the Mozart effect to make them smarter as they go.

Theme songs

A couple days ago, Josh Hanagarne posted a question on his blog World's Strongest Librarian: what's your theme song? If your life were a movie, what tune would play when you came onscreen?

It's a fun question. So fun, I'm stealing it. (Thanks, Josh.)

I've picked up various anthems over the course of my life. Here are a couple:

Adam Ant, "Goody Two Shoes"

Don't drink don't smoke—what do you do?
Don't drink don't smoke—what do you do?
Subtle innuendos follow
Must be something inside

Loved this when it came out in 1981. What can I say? I was a very obedient, boring kid.

I still consider "Goody Two Shoes" an anthem of sorts. Turns out being a good adult is more difficult than being a good 12-year-old. I'm glad nobody told me this at the time.

They Might Be Giants, "Dead"

Now it's over I'm dead and I haven't done anything that I want
Or, I'm still alive and there's nothing I want to do

I was 21 when Flood was released. I had little idea of what I wanted to do with my life, and a great fear that I'd never know. Nothing expressed that feeling better than "Dead." I've sorted it out since then, but still have great affection for this song.

* * *

These days, if I need a specific theme song, I write it myself. It's good to be a songwriter.

How about you? What are your songs, and why?

Playa hater

Well, shoot.

Ron the Drummer and I have made scratch recordings of some of our latest tunes. I want to throw a few up on the blog, but Blogger doesn't come equipped with a way to do that. You can post images, even video, but not music.

Bandcamp (a player suggested by Jeff Shattuck of Cerebellum Blues) looks nifty, but they won't do MP3s.

I suppose I could figure out how to convert our MP3s to video and post them as video, but I'm hoping we can find a less kludgey solution.

I'll keep searching for a suitable widget. In the meantime, feel free to shoot me recommendations.

Advocacy, naming conundrums, and the Cinder Bridge website

Construction of the new and improved Cinder Bridge website continues apace. Well, maybe not "apace." It continues in fits and starts, whenever I happen to have time to poke at it.

In a sense, working on the website is more difficult now than when I did the original version. Back then I had no real experience with design. I wanted the thing to look good, sure, but I was satisfied with a semi-decent amateur effort. These days I create book covers for a living. I'm supposed to know what I'm doing. So now, of course, it has to be perfect.

What do they say about doing surgery on your own baby? Oh yeah: don't.

Anyway, I think I've finally gotten myself past the it-has-to-be-perfect stage. The mockup of the home page is almost done. Almost. Just as I was about to declare it complete and move on, I realized that there was a problem.

The new website will have an additional page for our ME/CFS advocacy efforts, with information about the disease and a blurb about why we recorded Everybody Knows About Me. All well and good. But the navigation link to this future page says "Advocacy."

People familiar with the band might guess that means advocacy for ME/CFS. No one else will.

Possible alternatives?

• ME/CFS advocacy
  
  Doesn't fit, and I'd rather not make the links smaller if I can avoid it. Also, it shares a problem with ...
  
  
• ME/CFS
  
  That's OK, but I'd like to eventually expand our advocacy to all neuroimmune diseases. We could be a lot more powerful if people with ME/CFS, fibromyalgia, Lyme disease, multiple chemical sensitivities, and others banded together.
  
  
• Neuroimmune advocacy
  
  Doesn't fit.
  
  
• NID advocacy
  
  You've figured out that NID stands for neuroimmune disease because of the context, but no one else will know.

If you have any ideas, I'm all ears.

Lyrics evolving

From time to time, family members will encourage me to try to sell my songs to other people. It's not a bad idea. I've heard that selling songs can help get you discovered as an artist. If nothing else, selling your songs to famous people means they get heard.

Still, I think I'd find myself at a disadvantage if I had to write my stuff on commission and on deadline.

Last night I spent some time looking through lyrics and checking them for errors. By errors I don't mean typos, but inaccuracies. Lines I don't sing the same way anymore because they changed over time without my noticing.

For instance, scanning a love song I wrote a couple years ago, I came across the following:

Put down your battle plans, put down your ammunition
They will still be with you
At the coming of the dawn

Now it goes:

Put down your battle plans, put down your ammunition
They will be here waiting
At the coming of the dawn

Having to sing my songs over and over again forces me to be aware of how they actually sound. It pushes me to make them better.

I wonder how that love song would look now if I'd needed to immediately hand it off to somebody else. I wonder if I would have thought to change the line in time.

Under construction

Back in 2003, Ron the Drummer and I agreed that Cinder Bridge needed a website. I exhausted every scrap of HTML knowledge I had to create ...

www.cinderbridge.com

Yep. I made that.

Oh, it's not terrible, I suppose. It's easy enough to navigate. There aren't any egregious design flaws. There's not one bit of text in Comic Sans. Still, standards for such things have risen in the last seven years, and my efforts are pretty obviously DIY.

Also, I've been spoiled by the blogging interface. Type, save, publish. If I want to make a revision or new post live, I click a button. I don't have to deal with ftping a revised page somewhere. Doing it the old way shouldn't be such a stumbling block, but it is. I haven't updated our Events page since ... let me check ... June 29.

Of 2009.

Anyway. We've been intending to replace the site with something better for years. A couple of months ago, I did some research and decided to hire the work out. I'll do most of the basic design, but none of the coding. My life is too busy to waste it relearning HTML and testing everything I do in five different browsers. The people we hire will also have the knowledge to build in a content management system, which will make updating the site more of a one-click affair.

Part of me feels a little silly devoting any real time to this. We don't absolutely need a website when we have Myspace (be it ever so defunct) and a blog. But from time to time, it'll be nice to have somewhere professional to send people.

Word from PNAS

According to Mindy Kitei at CFS Central, the editor-in-chief of the Proceedings of the National Academy of Sciences has gone on record saying the FDA/NIH paper on XMRV would be published within weeks.

www.cfscentral.com/2010/07/fdanih-paper-update.html

Nice to hear. I find news more credible when a named source stands behind it. That said, I'm still not celebrating until I see the paper with my own eyes, and find that it hasn't been watered down.

Weeks

Apparently, the NIH/FDA study on XMRV will be published within weeks.

Apparently.

From CFIDS.org:

The study pending from NIH/FDA attracted a lot of attention in June after news of its conclusions was leaked by a Netherlands news agency. The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks.

From Mindy Kitei of CFS Central:

Sources to CFS Central say that the researchers' conclusions have not changed.

I am cautiously hopeful, but I'm not celebrating until I see the damn thing in print.

XMRV: Still in the dark

This in from Mindy Kitei of CFS Central

CFS Central has learned that it was the CDC that made the initial request to pull the FDA/NIH XMRV paper after the Proceedings of the National Academy of Sciences (PNAS) accepted it. Sources have told CFS Central that higher-ups in the Department of Health and Human Services (HHS) made the ultimate decision to hold up the study. In addition, insiders said that HHS can keep any government study from being published—no matter how solid—and that it is anyone’s guess whether the FDA/NIH paper will eventually be published.

Full article here.

My hope is that CFS Central's anonymous sources begin stepping out of the shadows. To those of us who are familiar with the history, all of the above sounds absolutely credible. To everyone else it's the stuff of tinfoil hats. We need solid evidence that Department of Health and Human Services is censoring scientific research.

Or, if we really are just being paranoid, then we need clearer explanations as to what's going on. Because the information we've been getting is contradictory.

How about it, NIH? How about it, PNAS?

Nominate ME/CFS for a cube grenade

A few weeks ago, I wrote about how Hugh McCleod is creating a free cube grenade for the business or cause he deems worthiest. I nominated ME/CFS.

Now Hugh is opening the nomination up to friends of people with the business or cause. The catch is that the friends can't have a stake in the outcome.

So, if you do NOT have ME/CFS yourself, please go to gapingvoid.tumblr.com/submit and nominate ME/CFS. If you need help articulating the reasons it should win, here are a few bullet points for inspiration:

• ME/CFS causes chronic pain, crushing exhaustion, early death, and a host of other misery-inducing symptoms. There is no cure.
  
  
• Despite the severity of the disease, most people think of "chronic fatigue syndrome" (its more common name) as just above-average tiredness.
  
  
• Despite the severity of the disease, it's received less funding than hay fever.
  
  
• Much of the little funding ME/CFS has received has gone to research on cognitive behavioral therapy (not terribly useful) and graded exercise therapy (harmful to people who actually have this disease).
  
  
• There may be a link between ME/CFS and a retrovirus called XMRV. Two new studies on this were set to be published: one found the link, the other didn't. Both studies were put on hold. The negative paper was published soon after, despite significant flaws. The positive paper is still on hold.
  

Please, please find the time to do this. ME/CFS isn't the only worthy cause out there, but it's absolutely one of the most neglected.

An XMRV primer for the folks who lightly skim my ME/CFS posts

From a conversation I had with a friend yesterday (highly paraphrased):

Friend: I've been reading your blog lately. What's the big deal about these XMRV studies?

Me: Remember how last year, someone discovered a link between the retrovirus XMRV and ME/CFS? Now other scientists are trying to figure out if the link really exists.

Friend: What if it does? What difference would it make?

Me: Because if there's a link, then they can help ME/CFS patients by treating the retrovirus. Like with HIV. Y'know how AIDS used to be a death sentence? AIDS is still something you really don't want to have, but now if you're on the retrovirals you can live with it.

Friend: But is there a treatment for XMRV?

Me: No. But if there's definitely a link, they'll have a reason to develop one.

Friend: Ah.

Dueling studies: One down

On Tuesday, we learned that the publication of two contradictory XMRV studies were on hold. Today, we finally have published results ... of the CDC paper.

I could speculate about why the NIH study is still awaiting release, but all the information has been confusing and contradictory, so I'll hold off for now. Instead, let's look at the results of the CDC study. Did they fail to detect a link because there isn't one, or because their methods were flawed?

The cohort problem

The CDC defines ME/CFS very broadly. As a result, their previous research includes many people who probably don't have ME/CFS. Though this paper is touted as a replication study of the Whittemore Peterson Institute's research, they didn't define their population using the same criteria. Here's an excerpt (all emphasis mine):

The 1994 International CFS case definition [used by the CDC] and the Canadian Consensus Criteria [used by the Whittemore Peterson Institute] are different and do not necessarily identify similar groups of ill persons. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy.

These are all common symptoms of ME/CFS.

Detection techniques

According to Dr. Suzanne D. Vernon, the CDC did not replicate the WPI study's techniques:

[T]he samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this weren’t bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.

You can read Vernon's critique at CFIDS Association of America's site. It's worth noting that the CFIDS Association of America is regarded with suspicion among many members of the ME/CFS community, who view it as the CDC's lapdog. In other words, the criticisms that the CAA now levels at the CDC are in no way knee-jerk responses to news it didn't want to hear.

So, it seems as though the CDC paper has some serious issues. Now we need to convince the powers that be to release the NIH study. Only then will we be able to see if it holds up to similar scrutiny.