If you're a casual reader here, you may wonder why you frequently find posts about seemingly obscure neuroimmune disorders on what you thought was a band blog. Or, you might wonder why I keep talking about music on an ME/CFS blog.
You're in luck: I've created permanent pages that explain everything.
Cinder Bridge FAQ
About ME/CFS
Both of these are in handy FAQ format. People seem to like reading those, and I have way too much fun making them. Enjoy!
Thursday, January 27, 2011
Friday, January 21, 2011
XMRV: Frequently asked questions
Every now and again, I write about XMRV research as it pertains to ME/CFS (myalgic encephalomyelitis, aka "chronic fatigue syndrome"). Readers who are part of the ME community understand why it's important, but others may wonder why I keep writing about the medical thingy with the funny name. If you're one of those people, this little FAQ is for you.
What is XMRV?
A retrovirus, similar to HIV. Xenotropic murine leukemia virus-related virus was first discovered in 2006.
What's the connection to ME/CFS?
In October 2009, the Whittemore Peterson Institute for Neuro-Immune Disease and the Cleveland Clinic found that a significant majority of ME/CFS patients tested positive for XMRV, as compared to only 3.7 percent of healthy subjects. Another study by Alter and Lo found a link between this disease and MLVs—other retroviruses related to XMRV.
Does XMRV cause ME/CFS?
Unknown. It may be the cause, in the same way that HIV eventually leads to AIDS, or it may be one of many opportunistic infections that occur because ME/CFS patients' immune systems are already compromised. We'll need further research to tell cause from effect.
Why are you even writing about this? I read that recent studies showed there was no real link between XMRV and ME/CFS—that the positive results happened because of a lab contaminant.
Not exactly. Those four studies—by amazing coincidence all published on the same day—showed that it's possible to get false positives via contamination if you use a method of testing called PCR. They didn't disprove the studies that had previously been done.
OK, but don't the "contamination" studies at least cast doubt on the link between ME/CFS and XMRV?
Again, not exactly. The Whittemore Peterson Institute was keenly aware of the potential problems with PCR and used multiple methods to detect XMRV. Antibody testing, for instance, revealed that patients had antibody responses to XMRV. It isn't possible for a lab contaminant to cause antibody responses.
You can read a more in-depth explanation from a virologist here.
Has XMRV been linked to any other diseases, or just ME/CFS?
Some studies have found XMRV in patients with prostate cancer (where it was first discovered), chronic Lyme disease, and autism.
No offense, but I don't have any of those diseases. Why should I care?
Because it's infectious. There's a chance that you can contract XMRV the same ways you do HIV.
No problem. I always use condoms, and I don't shoot up with dirty needles.
That definitely helps! Unfortunately, there's a pretty good chance XMRV is also in the blood supply. Try not to need a transfusion.
If it's that big a problem, I'm sure there's already tons of grant money rolling in for XMRV research. We'll have treatments soon, right?
Remember how funding for AIDS didn't take off until it was a full-blown epidemic ...?
Yeah, but certainly we've learned from our mistakes.
It would appear not. As yet, the Whittemore Peterson Institute receives NO federal funding to study XMRV.
Gah! Do they take donations?
Thought you'd never ask!
What is XMRV?
A retrovirus, similar to HIV. Xenotropic murine leukemia virus-related virus was first discovered in 2006.
What's the connection to ME/CFS?
In October 2009, the Whittemore Peterson Institute for Neuro-Immune Disease and the Cleveland Clinic found that a significant majority of ME/CFS patients tested positive for XMRV, as compared to only 3.7 percent of healthy subjects. Another study by Alter and Lo found a link between this disease and MLVs—other retroviruses related to XMRV.
Does XMRV cause ME/CFS?
Unknown. It may be the cause, in the same way that HIV eventually leads to AIDS, or it may be one of many opportunistic infections that occur because ME/CFS patients' immune systems are already compromised. We'll need further research to tell cause from effect.
Why are you even writing about this? I read that recent studies showed there was no real link between XMRV and ME/CFS—that the positive results happened because of a lab contaminant.
Not exactly. Those four studies—by amazing coincidence all published on the same day—showed that it's possible to get false positives via contamination if you use a method of testing called PCR. They didn't disprove the studies that had previously been done.
OK, but don't the "contamination" studies at least cast doubt on the link between ME/CFS and XMRV?
Again, not exactly. The Whittemore Peterson Institute was keenly aware of the potential problems with PCR and used multiple methods to detect XMRV. Antibody testing, for instance, revealed that patients had antibody responses to XMRV. It isn't possible for a lab contaminant to cause antibody responses.
You can read a more in-depth explanation from a virologist here.
Has XMRV been linked to any other diseases, or just ME/CFS?
Some studies have found XMRV in patients with prostate cancer (where it was first discovered), chronic Lyme disease, and autism.
No offense, but I don't have any of those diseases. Why should I care?
Because it's infectious. There's a chance that you can contract XMRV the same ways you do HIV.
No problem. I always use condoms, and I don't shoot up with dirty needles.
That definitely helps! Unfortunately, there's a pretty good chance XMRV is also in the blood supply. Try not to need a transfusion.
If it's that big a problem, I'm sure there's already tons of grant money rolling in for XMRV research. We'll have treatments soon, right?
Remember how funding for AIDS didn't take off until it was a full-blown epidemic ...?
Yeah, but certainly we've learned from our mistakes.
It would appear not. As yet, the Whittemore Peterson Institute receives NO federal funding to study XMRV.
Gah! Do they take donations?
Thought you'd never ask!
Wednesday, January 19, 2011
One melody, slightly used
The scene: I'm doing dishes, listening to music on my iPod.
[long piano and guitar intro begins]
That's odd. I don't recognize this song at all.
[Leon Russell starts singing]
Oh, "Prince of Peace." Cool. I haven't heard this in forever.
[fourth measure into the verse]
Crap. That part of the melody is very similar to something I just started writing. Crap.
It's salvageable. The vibe of "Prince of Peace" is very different from New Song, and I should be able to change up my melody enough that I don't get into trouble. Doing so means one more thing to think about, though, and I'm having enough trouble getting New Song off the ground.
I realize this happens to songwriters all the time. Still annoying.
[long piano and guitar intro begins]
That's odd. I don't recognize this song at all.
[Leon Russell starts singing]
Oh, "Prince of Peace." Cool. I haven't heard this in forever.
[fourth measure into the verse]
Crap. That part of the melody is very similar to something I just started writing. Crap.
* * *
It's salvageable. The vibe of "Prince of Peace" is very different from New Song, and I should be able to change up my melody enough that I don't get into trouble. Doing so means one more thing to think about, though, and I'm having enough trouble getting New Song off the ground.
I realize this happens to songwriters all the time. Still annoying.
Saturday, January 15, 2011
Personality infringement
Wendy Adams is an amazing musician who lives in Tucson. She used to gig all over town and give voice lessons; she was my first vocal coach. When health problems made it impossible for her to continue performing, she turned to art as a creative outlet.Much of Wendy's art has a musical theme. Up until recently, her gallery featured a bunch of watercolor and pastel portraits of famous musicians. She's since taken those off the selling block. In Wendy's own words:
I finally got a little legal advice today (very concrete) about the workings of copyright, personality rights infringement and the use of celebrities likenesses in art not commissioned by the celebrities themselves. You can DO it. But you can't do it and sell them without permission. I have removed all art depicting celebrities from my studio.
I had known that if you took a photo of someone, you needed permission to sell that photo—a model release. Which makes perfect sense. A photograph is an exact visual representation. Selling it without the permission of everyone in it would be a violation of privacy.
But a painting?
The way I see it, when somebody draws or paints you, whatever ends up on canvas isn't you anymore. It's an image of you filtered through the artist's interpretation. The artist owns that, just as much as she owns her thoughts and feelings and beliefs.
Of course, I'm coming at this from the perspective of someone who isn't famous. I suppose if Cinder Bridge hits the big time, I might theoretically become irked that someone's making money off my likeness. I'm the one who spent all that sweat equity building my personal brand, right? If an artist profits from the celebrity I've worked so hard to earn, I want a cut!
Theoretically. In reality, I don't think any of that would occur to me. It would be a nice ego stroke, knowing people wanted paintings of me on their walls. Or, if I reached the point where I became too jaded to care, I'd probably be making so much of my own money as a famous person that I wouldn't need the extra cash.
At any rate, I'm kind of fascinated by the implications of such rules, and how they apply.
- Does every portrait need to have a model release before it's sold, or only portraits of famous people?
- If the latter, how famous do you have to be before you're entitled to copyright your face?
- Comedians aren't sued for doing impersonations. Why is that different?
- What if I write a song about a celebrity? Do I need his permission?
I don't know, maybe I'm missing something. Is it just me? Or does this little piece of copyright law strike anybody else as odd?
* * *
Note: Tom Petty's Halloween by Wendy Adams is used here with her permission. She tells me that it's legal for me to post the image as long as there's no money involved.
Wednesday, January 12, 2011
Secondary gains
I had a good friend in college. Call her Liz.
Liz was an artistic type, very bright, with a flair for the dramatic. She made no secret of her emotional state, whatever it happened to be at the time. Happy events made her bounce off the walls with joy. Setbacks were cause for much handwringing and gnashing of teeth.
At some point during our freshman year, Liz developed an odd health problem. I don't remember all the details, but one of the symptoms involved numbness down one side of her body. Understandably concerned, she went to see a doctor.
After her appointment she reported the doctor's diagnosis: her symptoms were psychosomatic. She seemed content with this explanation. I accepted it as well, and life continued on as normal.
Fast-forward a month or so. My high school friend Larry visited, and he and Liz were hanging out in my dorm room. Liz made some mention of physical discomfort. Larry offered her a backrub. She said yes, and Larry went to work. After about a minute, Liz cheerfully informed him that she couldn't feel anything he was doing. Larry kneaded harder. No dice.
Later, after Liz had left the room, Larry turned to me, baffled.
"I should have been hurting her," he said.
For the first time, I gave some actual thought to Liz's diagnosis. I had a solid layman's understanding of what psychosomatic disorders were. I knew that the symptoms, though caused by emotional disturbances, were supposed to feel real—that the patients weren't faking. Still ... If Liz's "psychosomatic" numbness was so real that my big, very strong friend couldn't penetrate it, what did psychosomatic mean?
Lily Cooper recently wrote a very interesting article about the history of psychosomatic illnesses, aka somatoform disorders, aka conversion disorders, aka hysteria. If you have ever given credence to the idea that emotions can manifest as physical symptoms, give it a read. A couple of choice excerpts:
From multiple sclerosis (once dismissed as "hysterical paralysis") to myalgic encephalomyelitis (still derisively referred to as "chronic fatigue syndrome"), the psychologizing of biomedical diseases has a long, if not exactly proud history. The question is why. In the absence of a mechanism—an explanation for how people can think themselves sick—where is the evidence?
Mental health professionals who believe psychosomatic illnesses exist make the case that patients benefit from secondary gains. Here's a rundown from Wendy Beall, who titles herself "Change Meister":
So apparently if you have unexplained symptoms and benefit from them in any way, shape, or form, the conclusion is inescapable. Your disease must be all in your head.
How scientific.
Patients with psychologized chronic illnesses will tell you that the advantages of being sick are highly overrated. They miss their careers. They miss the financial stability work gave them. Rather than attracting sympathy, they discover that most of their friends disbelieve and disappear. This suggests that if we are to accept secondary gains as indirect evidence, we should consider the other side as well. What are the secondary gains of assigning a psychological diagnosis to a biomedical disease?
If patients are to blame for their own suffering ...
Why did I so readily accept my friend Liz's diagnosis all those years ago? As I mentioned, Liz was artistic, highly emotional, and dramatic. She had the requisite troubled childhood. On some level I'd assumed that Liz was the kind of person who would get a psychosomatic illness. The explanation made sense, and things that made sense made me happy.
Only years later did it occur to me to wonder. How long did Liz sit in that doctor's office before he made his assessment? Did he put any real time and effort into exploring other possibilities?
Or did it simply make his job easier to assume she was the type?
Liz was an artistic type, very bright, with a flair for the dramatic. She made no secret of her emotional state, whatever it happened to be at the time. Happy events made her bounce off the walls with joy. Setbacks were cause for much handwringing and gnashing of teeth.
At some point during our freshman year, Liz developed an odd health problem. I don't remember all the details, but one of the symptoms involved numbness down one side of her body. Understandably concerned, she went to see a doctor.
After her appointment she reported the doctor's diagnosis: her symptoms were psychosomatic. She seemed content with this explanation. I accepted it as well, and life continued on as normal.
Fast-forward a month or so. My high school friend Larry visited, and he and Liz were hanging out in my dorm room. Liz made some mention of physical discomfort. Larry offered her a backrub. She said yes, and Larry went to work. After about a minute, Liz cheerfully informed him that she couldn't feel anything he was doing. Larry kneaded harder. No dice.
Later, after Liz had left the room, Larry turned to me, baffled.
"I should have been hurting her," he said.
For the first time, I gave some actual thought to Liz's diagnosis. I had a solid layman's understanding of what psychosomatic disorders were. I knew that the symptoms, though caused by emotional disturbances, were supposed to feel real—that the patients weren't faking. Still ... If Liz's "psychosomatic" numbness was so real that my big, very strong friend couldn't penetrate it, what did psychosomatic mean?
* * *
Lily Cooper recently wrote a very interesting article about the history of psychosomatic illnesses, aka somatoform disorders, aka conversion disorders, aka hysteria. If you have ever given credence to the idea that emotions can manifest as physical symptoms, give it a read. A couple of choice excerpts:
and ...
The idea that physical illnesses were manifestations of feelings and thoughts started with Charcot in the 1880's ... For instance, a man knocked unconscious for 5 days by a carriage was unable to speak, walk or remember the accident when he regained consciousness. Charcot diagnosed him as being hysterical because of the psychological trauma of the event.
After brain scans of patients suffering from chronic fatigue syndrome were shown to an expert scan reader in 1984, he said the punctate lesions he saw looked like the scans of AIDS patients. Months later the CDC issued its verdict. The town of Incline Village NV [where the epidemic had occurred] was suffering from mass hysteria.
From multiple sclerosis (once dismissed as "hysterical paralysis") to myalgic encephalomyelitis (still derisively referred to as "chronic fatigue syndrome"), the psychologizing of biomedical diseases has a long, if not exactly proud history. The question is why. In the absence of a mechanism—an explanation for how people can think themselves sick—where is the evidence?
* * *
Mental health professionals who believe psychosomatic illnesses exist make the case that patients benefit from secondary gains. Here's a rundown from Wendy Beall, who titles herself "Change Meister":
When you call in sick to work and escape the whole onerous day without being accused of deliberately shirking your duties, you are enjoying a secondary gain of illness ... When someone waits on you tenderly and takes care of all the chores as you languish in bed, you are enjoying a secondary gain. When a child escapes a day at school by claiming a stomachache or sore throat, this is a secondary gain—and often escalates to blatant manipulation when paired with an overly protective parent.
... if you are not getting well despite attempts to heal, you ought to consider how your symptoms benefit you. Remember, we all use illness to get what we believe we can't get comfortably by direct means.
So apparently if you have unexplained symptoms and benefit from them in any way, shape, or form, the conclusion is inescapable. Your disease must be all in your head.
How scientific.
* * *
Patients with psychologized chronic illnesses will tell you that the advantages of being sick are highly overrated. They miss their careers. They miss the financial stability work gave them. Rather than attracting sympathy, they discover that most of their friends disbelieve and disappear. This suggests that if we are to accept secondary gains as indirect evidence, we should consider the other side as well. What are the secondary gains of assigning a psychological diagnosis to a biomedical disease?
If patients are to blame for their own suffering ...
- We don't have to feel sorry for them. We can give a knowing smile and say they need to get over themselves. Self-righteous indignation and condescending pity are far less distressing than compassion.
- We don't have to entertain notions of an unjust universe, or be angry that sometimes bad things happen to good people.
- Physicians who can't immediately identify a disease don't have to admit it. Instead they can tell their patients it doesn't really exist.
- Insurance companies that don't cover mental illnesses can deny claims.
* * *
Why did I so readily accept my friend Liz's diagnosis all those years ago? As I mentioned, Liz was artistic, highly emotional, and dramatic. She had the requisite troubled childhood. On some level I'd assumed that Liz was the kind of person who would get a psychosomatic illness. The explanation made sense, and things that made sense made me happy.
Only years later did it occur to me to wonder. How long did Liz sit in that doctor's office before he made his assessment? Did he put any real time and effort into exploring other possibilities?
Or did it simply make his job easier to assume she was the type?
Monday, January 10, 2011
Let This Be a Bridge
"When you don't know what to do, make art."—Carolyn Anne Anderson
Let There Be a Bridge is the best response I've seen to Saturday's tragedy. It's by Carolyn Anne Anderson, whose gallery opening we played for a year and change ago.
If art ever needed a reason to exist, this would be it.
Saturday, January 8, 2011
A bad day in Tucson
I heard the news about Giffords and the other victims around noon. By the time various media were reporting that she wasn't dead after all, I had to pull myself away from the Google searches and Facebook updates. Rehearsal awaited.
The TV was on at Ron's house. We watched a little bit of the press conference as we set up. Not a lot that we hadn't heard already. The one bit of data I hadn't known before was that the shooting took place at the Safeway on Oracle, just north of Ina. I used to shop there all the time.
Ron turned the set off. I wished he hadn't done that, but wasn't sure why. They were repeating the same information at this point. If anything new surfaced, I could hear about it in a few hours. And after a bunch of rehearsals canceled due to illnesses and holidays, we really needed to play.
So, we played.
I asked Ron to turn the TV back on when we were done. Funny, that need to stay connected. It wasn't like I was going to rush out and DO something when I learned if Giffords was still alive, or the killer's name, or the exact death toll.
The TV was on at Ron's house. We watched a little bit of the press conference as we set up. Not a lot that we hadn't heard already. The one bit of data I hadn't known before was that the shooting took place at the Safeway on Oracle, just north of Ina. I used to shop there all the time.
Ron turned the set off. I wished he hadn't done that, but wasn't sure why. They were repeating the same information at this point. If anything new surfaced, I could hear about it in a few hours. And after a bunch of rehearsals canceled due to illnesses and holidays, we really needed to play.
So, we played.
I asked Ron to turn the TV back on when we were done. Funny, that need to stay connected. It wasn't like I was going to rush out and DO something when I learned if Giffords was still alive, or the killer's name, or the exact death toll.
Friday, January 7, 2011
Practice makes ...
As you may have noticed from my last post, I've been feeling kind of down about my lack of musical achievements of late. Also pessimistic about my ability to turn that around. Opportunities abound. Barriers to opportunities also abound. My motivation to find my way around the latter to get to the former have been low.
Today I practiced. It was the first time in a week or so that my fingers made contact with keys. When I finished, my outlook was a little better. Not so much for my ability to overcome the barriers, but for my worth as a human being. Music is something I can do. Okay, I haven't found a vast audience to hear us play. Music is still something I can do.
Today I practiced. It was the first time in a week or so that my fingers made contact with keys. When I finished, my outlook was a little better. Not so much for my ability to overcome the barriers, but for my worth as a human being. Music is something I can do. Okay, I haven't found a vast audience to hear us play. Music is still something I can do.
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