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.