XMRV papers on hold

We're going to have to wait to see the results of the latest XMRV studies.

Last week, the FDA and NIH announced that they had independently confirmed the Whittemore Peterson Institute's original findings linking ME/CFS with the retrovirus XMRV. And there was much rejoicing among all of us who hope the link will lead to treatment, even a cure someday.

The CDC had also wrapped up an XMRV study. Though they didn't officially announce their results, CFS Central reported that they were negative. Disappointing, but not surprising to anyone familiar with the history. The CDC defines ME/CFS very broadly, and their research likely includes patients who don't actually have the disease.

There was nothing to do but wait for the release of both studies. Then we could examine the methodology and draw conclusions about the discrepancies.

According to the Wall Street Journal, however, both reports are being held from publication.

Kuan-Teh Jeang, editor-in-chief of Retrovirology, said the Switzer paper went through peer review and was accepted for publication when he got a call from the authors earlier this month. They asked that the Retrovirology paper be held.

"My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," Dr. Jeang said.

In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation.

Entire article here.

I don't want to don the tinfoil hat and immediately call shenanigans. I do want to know what's going on. Both of these papers were peer-reviewed; both were accepted by their respective journals. For the government to suddenly step in and suppress the results is a little bizarre, and it makes me nervous.

A libertarian analysis of copyright

Interesting post up on Human Advancement about what copyright should be.

It is immoral to try to make money from another's work at the expense of sales by the original author, but this does not preclude all copying nor distribution as immoral.

It is immoral, and ultimately self-destructive, to always seek value for nothing.

Enforcement of any of this is immoral, both by the above, and because enforcement in any but small numbers of edge cases, is not possible without prior restraint or a requirement to prove innocence. Social sanctions are the only way to discipline behavior toward those principles, and that relies on how people evaluate the behaviors. [Emphasis mine.]

Entire essay is here. Read it. It's good.

I agree with all of the sentiments. I've repeatedly stated that I oppose draconian punishments for filesharing. I also oppose any punishment for limited filesharing—say, e-mailing a song to your friend because you think she'd like it.

On the other hand, I don't believe social sanctions alone will stop abusive sharing. They are mightily powerful if you happen to live in an Amish community or a small tribe with little meaningful connection to the outside world. They're not so powerful if your society enables easy hops to different social circles.

For social sanctions to work, a significant majority needs to disapprove of the bad behavior in question. Saying that's what should happen won't make it happen.

If I come up with some brilliant idea to make it happen, you'll be the first to know.

All my goodness has turned to badness

Does anybody remember a cheesy '80s song called "Obsession"?

I admit it, I like the song. It's catchy, it's fun, it's good to dance to. But it's dumb. Take this snippet:

My fantasy has turned to madness
And all my goodness has turned to badness

Nothing I can add to that, really.

I never would have thought anything could make "Obsession" goofier—until I saw the video.



Though I came of age when MTV emerged as a cultural force (and, you know, actually played videos), my family didn't get cable. I missed a lot. So today I filled in a bit of my pop culture past. I found "Obsession" on YouTube and watched it for the first time.

Oh. My. God.

First of all, you can't do a tune about unrequited passion as a duet. It doesn't make sense. This is a fundamental problem with the song itself, I grant you, but the visuals make it even more obvious.

Second, there's ... oh, hell. Pretty much everything else. The dance moves by the lead singers, which looked as though they were choreographed and performed by twelve-year-olds. The guy who kept raising his eyebrow at random intervals. The expression on the male singer's face as he lip-synched "All my goodness has turned to badness."

If I had seen this at age 16, when "Obsession" was released, I wonder what my reaction would have been.

Yes, I probably would have found it cheesy and kinda stupid. But I don't think I would have realized how indistinguishable it was from parody. That's just what videos were back then.

I blame my lack of discernment on my youth. Then again, the people involved in the production of this thing were all adults. What on earth were they thinking?

I wonder what we'll say "what were they thinking" about 20 or 30 years in the future.

Replication!

Well well. We have a positive replication study.

For those of you just tuning in, the Whittemore Peterson Institute discovered a link last year between ME/CFS and a retrovirus called XMRV. Their study was published in Science on October 8, 2009.

Subsequent research teams failed to replicate the WPI's findings. WPI (and anyone who gave more than a cursory glance to the research) argued that these weren't true replication studies. For an accurate test of the results, they needed to use the same methodology and the same patient cohort.

Today, the FDA and NIH announced that they have independently confirmed the WPI's original findings. Their press release is here.

Hop onto Hillary Johnson's blog for some excellent insider information.

I look forward to learning more about the actual study, yet to be published. In the meantime, this is a lovely bit of good news to brighten an otherwise ordinary day.

10 Tips for Songwriters

Ta da! Tom Slatter's 10 Tips for Songwriters is now available. The free ebook contains 10 tips from 18 different songwriters. My contribution is on page 13.

It's fun to read a bunch of these in one sitting. Different songwriters can have very different perspectives. In fact, advice from one songwriter will often directly contradict advice from another. I think this makes the book more useful. Read the entire thing, and you're bound to find something that resonates with the way you work.

Those of you who pursue creative endeavors but don't write songs should take a look too. If nothing else, it's interesting to get a glimpse into various songwriting brains.

Cattus interruptus

A few months ago, Ron the Drummer and his wife adopted a kitten. Unlike their other two cats, who are pretty mellow, Abby enjoys getting into everything and she knows no fear. Whatever the size or shape of the object, she looks at it and thinks, "I could climb that."

Also unlike the other cats, Abby has no problem being in the same room as Ron and me when we rehearse. The loudness doesn't faze her a bit.

It's made for some interesting rehearsals. As Ron and I practice, Abby will wind her way around the room, searching for some kind of trouble to get into. Sometimes she chews the cords or plays with the equipment. One time she attempted to climb a table lamp and knocked it over. The trick for us is knowing when to keep playing and when to stop what we're doing to prevent her from breaking something or hurting herself.

Today she wandered over to where I was sitting and gazed up at me with her patented "I could climb that" stare. Sure enough, a few measures before the song ended, she hopped up onto my lap.

I'm proud to say that I didn't miss a note. I finished the song with a cat on me.

In a way, it's good practice. At atmosphere gigs we have to ignore all manner of noises and distractions. If we can play through our own cattuccino machine, we can play through anything.

Memorizing

I spent a good part of practice tonight running through our newest song, trying to get the lyrics down.

Funny thing. When you embark on a songwriting career, nobody ever tells you that you'll have to work almost as hard at memorizing your own lyrics as you would anyone else's.

Piracy and perspective, part 2

About a year ago I linked you to an awesome article about crimes that incur lesser fines than music piracy. The list included kidnapping and arson.

Apparently we can now add environmental devastation as well.

Have a nice day.

The song filter

I was a notorious punster in high school.

Nobody was safe from me. Unless I was comforting you over the death of your dog, I'd take any opportunity to play with whatever words you used in conversation, twist them into something a little more fun.

Reactions were mixed. Some friends would groan and roll their eyes. Others gleefully jumped in, resulting in a bit of dorky verbal fencing. (Friend has a hard-boiled egg for lunch. "That looks eggsalent." "Yeah, and I didn't have to shell out too much for it." "If you did, the yolk would be on you." Egg cetera.)

This continued up through the end of my freshman year in college, at which point I had an epiphany: most of my puns were terrible.

OK, maybe epiphany is the wrong word. I already knew that of all the puns I made, maybe 5 percent were any good. The sudden revelation was that I didn't want to do the other 95 percent anymore. I decided that I would hold off unless I thought of something that was actually clever or funny.

Sometime after my firm resolution, I noticed something. I wasn't making any puns at all.

When I'd punned on a regular basis, you see, I had a process in my brain reserved just for wordplay. Absolutely everything I heard went through the pun filter. Can I do something with this word? With this sentence? How about this one? In becoming more discriminating, I'd effectively turned the filter off. As the bad 95 percent fell away, so did the good 5 percent.

* * *

Years later, my punning days far behind me, I discovered songwriting.

It was a whole new playground for my brain to romp around in. I was fascinated by how I could use this incredibly constrained format to express things more clearly and powerfully than I ever could in prose. After writing 13 songs in the space of a year, I set a goal to write at least 12 the next year—one per month.

That worked out for a couple of years, until new responsibilities piled on. I decided I'd go easy on myself when I took my current job. Goals are wonderful, but no sense in driving myself insane. These days I write about four songs a year.

But here's the thing. The count hasn't dropped so much because I'm busier. I mean, that's part of it. I am busier. But a bigger part is that, without the incentive to be constantly producing, the song filter is weak and intermittent. I'm less apt to encounter a phrase or experience or idea and go, Can that be a song?

So I've been thinking about kicking up my output again. I don't know if I need to set a specific quota. I just want the filter up and running full-time.

ME/CFS needs a cube grenade

I became acquainted with the work of cartoonist Hugh MacCleod when I read his book Ignore Everybody. Having thoroughly enjoyed the book, I found my way to his blog, Gaping Void, and discovered that he also draws cube grenades.

You don't know what a cube grenade is unless you're familiar with MacCleod, as he made the concept up. Essentially it's like a mission statement, only in the form of a drawing and with a whole lot more attitude.

Yesterday he announced that he was going to give away one of these babies for free. Quite a deal, given that they usually go for thousands of dollars. Anyone who wants to be considered, he said, should submit their idea to him in 500 words or less.

Well. I happen to know a worthy cause that could really use the attention. Here's what I told him.

ME/CFS needs a cube grenade

You've probably never heard of ME/CFS, which is why it needs a cube grenade. Here's a brief introduction, in handy FAQ format.

What the heck is ME/CFS?

A disease. The "ME" part stands for myalgic encephalomyelitis. The "CFS" part stands for chronic fatigue syndrome.

Oh, chronic fatigue syndrome! Yeah, I've heard of that. I don't get what the big deal is, though. I get tired too.

ME/CFS isn't just being tired. Symptoms vary from person to person, but commonly include:

• Chronic, debilitating pain
  
• Post-exertional malaise—symptoms get worse after physical or mental exertion and require an extended recovery period
  
• Flu-like symptoms, such as joint and muscle pain
  
• Cognitive impairment, including problems with short-term memory
  
• Crushing fatigue, which is not relieved by rest
  
• Greater susceptibility to fatal cancers and heart failure
  
• Other common symptoms include cardiac arrhythmias, chemical sensitivities, food sensitivities, blurry vision, eye pain, irritable bowel syndrome, and a host of other conditions that are nasty in their own right

A friend of mine says she has this thing, but every time I see her, she seems fine. I think she's just a hypochondriac.

Probably not. It's typical for sufferers to have good days and bad days (though a "good day" can still be pretty bad from a healthy person's perspective). If you see someone with ME/CFS out and about, you've probably caught them on a good day. You don't see them lying flat on their back for the rest of the week, in the privacy of their own home, recovering from their trip to the grocery store.

Is there a cure?

No.

Any hope for a cure sometime soon?

Hard to say. The Whittemore Peterson Institute for Neuro-Immune Disease recently found a link between this disease and a retrovirus called XMRV. However, it's not yet known whether XMRV causes ME/CFS in the same way HIV causes AIDS, or whether it's an opportunistic infection.

More research is needed. Problem is, the disease still gets almost no real funding, largely due to the perception that it's not a real thing. Much of the money it does get has gone toward questionable psychological research. WPI doesn't receive ANY federal funding yet.

That's messed up.

Yep. A cube grenade could really help the cause. A cube grenade would be a direct and powerful way to show:

• It isn't just being tired.
  
• It isn't imaginary.
  
• Just because sufferers often look fine doesn't mean they feel good.
  
• Bad things do happen to good people. If you blame the victim because it makes you feel better, you're part of the problem.

Change the culture surrounding ME/CFS, and you change sufferers' lives. In the long term, it encourages funding. More immediately, it increases the likelihood that sufferers will meet with heartfelt sympathy from the people closest to them rather than skepticism and cruel rejection.

One of the most misconceived treatments

When ME/CFS patients go to doctors, they're often told to get more exercise. Sometimes this is because the doctors don't believe ME/CFS is a real thing. They assume the patient is depressed, and that a little physical exertion will prove to them that there's nothing wrong. Other physicians do believe the disease is real, but they fear the effects of deconditioning.

Either way, they're wrong. A recent study out of Norway surveyed 828 people with ME/CFS to find out which treatments helped and which didn't. Among their findings:

One of the most misconceived treatments recommended by the medical profession is graded exercise therapy, yet 79% of the participants experience deterioration as a result. It stands to reason that with such limited energy to expend, using too much on exercise leaves woefully little, if any, energy for tasks of survival such as fixing meals, eating, paying bills, and bathing.

The full article about the study is here. Might be a handy printout for ME/CFS patients who are dreading their next appointment with the GP.

Songs between my teeth

The song I've been working on for over three months is finished. Hooray!

This means I'm between songs.

You know how it is when you get something stuck between your teeth, like one of those little popcorn shells? You work and worry it with your tongue, try to claw it out with fingernails, but you can't get it out to save your life ... until suddenly you do.

You feel enormous relief. All is right with the world. And yet, part of you kind of misses the struggle.

Same deal with songwriting. I've been ready to get this tune finished and put away for a while now. But I want to start working on some new song in its place, to give my mind something to work and worry over.

Day of Visibility

I saw Avatar back when it was in theaters. It's not the kind of movie I usually go out of my way to watch, but I wanted to find out what the fuss was about.

Essentially it was just a big dumb fun popcorn flick, not nearly as profound as it was trying to be. Still, one line caught my attention.

"I see you."

This was a phrase used by the Na'vi, the big blue alien characters. It carried a world of meaning. I see you. I acknowledge your existence. You are just as important as any creature that has ever lived.

I wished the entire movie had been better, to be worthy of that one sentiment.

* * *

Today, June 6, was Day of Visibility for Invisible Diseases.

A disease is called invisible when it isn't readily obvious that the people who have it are sick. Nobody sees them when they feel their worst because they're too ill to go anywhere. When they have a good day, good enough to venture out into the world, they don't look sick and everyone assumes they must be fine.

And when sufferers claim they are NOT fine? The healthy people in their lives often assume they must just want attention and sympathy.

Many people with ME/CFS, fibromyalgia, chronic Lyme, POTS, MCS, and other diseases learn to keep quiet. Day of Visibility gives them a chance to come out of the closet, knowing that fellow sufferers are also putting themselves on the line.

I hope that a lot of sick people took the opportunity.

I hope that when they did, their friends and family said, "I see you."

Bridge to nowhere

That song I've been working on may or may not be finished.

After getting two whole posts out of changing a particular rhyme (and then keeping it the way it was in the first place), I'm now struggling with the bridge. I'd previously decided to just make it an instrumental break, but then I came up with a cool vocal melody. What the heck, I thought, it's a short song. Even though I think I've said everything I want to already, there must be room for a few more words.

I wrote a couple versions of this bridge. In and of themselves, they were both fine. But none of them were satisfying me, and I finally figured out why. They provided a smoother transition from the second verse to the last. Problem is, I don't want a transition. I want there to be an abrupt scene jump.

A third version of the bridge shied away from transition. I liked it better. Unfortunately, it sort of contradicted what I say in the first verse.

Bah. Maybe I'll just stick with the instrumental.

Momentum

A new study shows that long-term antiviral treatment can help ME/CFS patients.

A new XMRV diagnostic test should be available by July 1.

Is it my imagination, or does it seem like things are actually happening?