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.

Protest the suppression of XMRV research

Yesterday we learned that publication of the latest XMRV studies is on hold. Today there is a petition on Change.org to stop the Department of Health and Human Services from suppressing the studies.

Sign the petition here.

For updates on the situation, check out CFS Central.