ME/CFS Awareness Day 2016

Today is ME/CFS Awareness Day!

If you're new to this band blog and you've never heard me sound off on ME/CFS, you may be thinking, "What is ME/CFS, and why should I be aware of it?" I'll answer that question and others in a handy FAQ format.

What's ME/CFS?

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 morbidity—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 exhaustion, which is not relieved by rest
• 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 Open Medicine Foundation is working to discover biomarkers and effective treatments, but this disease gets very little funding. And despite the considerable evidence that ME/CFS is biological in origin, much of the funding it does get goes toward questionable psychiatric research.

That's messed up. I wish there were some way I could help.

You can help in more ways than you know. Here are a few ideas:

• Donate to the Open Medicine Foundation, an organization whose primary purpose is finding a cure for ME/CFS.
• Wear your underwear on the outside of your clothes. (It's a fundraising thing, like the ALS Ice Bucket Challenge.)
• Join #MillionsMissing on May 25 to protest the lack of funding for ME/CFS research.
• If you're too sick or too far away to make it to any of the #MillionsMissing physical protest sites, get involved with the virtual protest.
• If you have a friend with ME/CFS, make an effort to keep in touch. Your friend may not have the energy to call you, but he or she would probably love to hear from you.
• If someone you know makes a comment about how chronic fatigue syndrome is just laziness, don't let it pass. Explain that ME/CFS involves serious pain and real impairment, not just greater-than-average tiredness.

Hey, you said this was a band blog. How'd you end up doing ME/CFS advocacy? Seems kinda random.

Same way anyone ends up doing disease-related advocacy: I know someone who has the disease. He had an amazing career and a great life. Now he lies in bed all day, in pain, unable to do any of the things he loved. It sucks. There aren't words to convey how much it sucks.

But being a songwriter, I wrote a song about it. "Everybody Knows About Me" is told from the perspective of someone who lives with the disease ... and other people's prejudices.

So that's something else you can do:

• Send "Everybody Knows About Me" to anyone who might benefit. That includes people who have the disease and people who don't understand it. You can stream it on our website or download it for free on this page (top of the sidebar). Once you've obtained it, make as many copies as you like and send it to as many people as you like.

Thanks for listening.

Live from FireFest

The awesome Frank Ramos likes to go to music events around Tucson and videorecord the performers. Here are a couple of songs he captured from last night's gig.

"The Line." You may appreciate this if you've ever spent a lot of time in the company of an addict, particularly one whose fortunes are tied to yours.

Our ME/CFS advocacy song. Frank was only able to get the last few words of my introductory spiel, so here's a caption:

I wrote this song about somebody living with myalgic encephalomyelitis, a disease that causes chronic pain, crushing exhaustion, and in many cases, early death. If you're wondering why you've never heard of myalgic encephalomyelitis, that's probably because it's more commonly known as "chronic fatigue syndrome," which is a stupid name for a serious disease. The song is called "Everybody Knows About Me."

Thanks, Frank!

Making a disconnection

Ever since writing "Everybody Knows About Me," our ME/CFS advocacy song, I've had this fantasy. We're playing at a coffeehouse. Someone with ME/CFS is in the audience, and she (or he, but I'm going to make her female because I hate writing "he or she") is there with friends. While her ME/CFS isn't severe (she couldn't leave the house if it were), the outing takes its toll. She wants to go home and collapse. Her friends, well-meaning but clueless, negotiate with her. Just another half hour, they say.

She doesn't want to argue, so she tries to hang in there. We finish whatever song we're playing, and I launch into an introduction:

"I wrote this next song about somebody living with myalgic encephalomyelitis, a disease that causes chronic pain, crushing exhaustion, and, in many cases, early death. If you've never heard of heard of myalgic encephalomyelitis, that's probably because it more commonly goes by the term 'chronic fatigue syndrome,' which is a stupid name for a serious disease. The song is called 'Everybody Knows About Me.'"

This grabs the attention of everyone at the table. Though they came to socialize, now they stop and listen to the words. The person with ME/CFS feels vindicated. The friends are chagrinned, realizing that on some level they had assumed she was being overly dramatic. Everyone goes home at the end of the song, and her friends take her more seriously from there on out.

That's the fantasy.

When we played "Everybody Knows About Me" at the Tucson Folk Festival this Sunday, I hoped we could make that kind of connection with the audience. That somebody listening would be happy that somebody else understood. Maybe that happened. I don't know. But the one story I heard ended differently.

Ron the Drummer found out that someone he knows went to see us play. With her was a friend who has ME/CFS. They left in the middle of our set because "Everybody Knows About Me" made the woman with ME/CFS uncomfortable.

I always assume that some, or even most reactions to our music will be lukewarm at best. It doesn't matter who you are: not everybody is going to be a fan. So if this particular woman had wanted to leave because she thought we sucked, I would have forgotten about it by now. But "uncomfortable" wasn't a response I expected. And unfortunately, the details above are the only details I know. Ron has no idea why she became uncomfortable.

I have a couple of theories. One is that she thought my little intro speech was over the top, what with the "in many cases, early death" part. The people I know with ME/CFS, the ones I talk to, are already aware of that statistic. They don't want it to be true, but it is, and they want the rest of the world to know about it.

Maybe our erstwhile listener hadn't heard this before. Maybe tossing it out so casually was insensitive.

The other theory is that she prefers to maintain a positive outlook, and she doesn't want songs like mine evoking pity on her behalf. A possibility that never occurred to me until today.

For the most part, feedback on "Everybody Knows About Me" from ME/CFS sufferers has been positive. I know it's impossible to please everyone. Still, it's disconcerting when one of my songs has the opposite of its intended effect. I wish I knew what happened to chase this listener away. For what it's worth, I hope the rest of the Folk Festival treated her better.

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:

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.

and ...

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?

Speak of the devil

Sometime after we recorded Everybody Knows About Me, I sent a CD with that song and a few others to the U.S. Copyright Office for registration. I sent it FedEx to ensure that it wouldn't get lost. This was maybe 2006, 2007 at the latest.

I received the certificate of registration in the mail today.

Funny thing is, I'd just been talking with Ron about this a couple of days ago. I told him that I knew I'd sent the thing off, but I wasn't sure if they hadn't responded, or if I'd gotten something from them and simply forgotten. The latter seemed like the kind of thing I would do.

Nope. It just took them a few years to get round to it. Better late than never, I suppose.

Ripple effect

When people ask why I wrote Everybody Knows About Me, our song about living with undiagnosed ME/CFS, I usually give the short version: I know somebody who has it.

The short story ought to be the whole story. I witnessed the suffering of a person who is very close to me. I saw how the prejudice around his disease compounded his suffering. Of course I would want to get his message out to the world in the best way I knew how.

And I did. It just happened a little more circuitously than that.

Back in 2005, I copyedited a book called From Cotton Fields to Board Rooms. It's a memoir by an African-American, Joseph D. Greene, who grew up in Georgia when blatant and brutal discrimination was taken for granted. Starting out with only $35 and a high school diploma in his pocket, he worked his way up the corporate ladder, earning a bachelor's degree and a master's degree along the way.

With what miniscule free time he had, he gave back to the community. He became the first black person to serve on dozens of governing boards. When stricken with cancer later in life, he became active in fundraising for a cure.

This man's life blew me away. With so little money, so little opportunity, and all of society conspiring to keep him a second-class citizen, he thrived. He made other people's lives better.

And what about me? Here was a cause staring me right in the face: thousands upon thousands of people crushed under the heels of a disease that few believed existed. What had I, the middle-class white girl from the suburbs, contributed to that cause? Nothing at all.

With all the resources and opportunities I had at my disposal, I should be Doing Something. I should found an organization! Form a committee! Raise money to find a cure for chronic fatigue syndrome!

(Back in 2005, I didn't know that there were other, better names for "chronic fatigue syndrome.")

When I tried to think of how I might found my organization or form my committee, I stalled out. I had no clue as to how one accomplished such things. I also couldn't quite see myself as the leader of this little movement. I'm not the kind of person that other people follow.

This rattled around in my head for a few days, and then something else occurred to me. Other CFS organizations already existed. Other fundraising efforts were already underway. It wasn't like I had some brilliant idea for raising money or awareness than they hadn't already thought of.

Finally, the part of me that's smarter than the rest of me spoke up.

You're not the type who does committees, it said. You write songs. Why don't you write a song?

Huh. Yeah.

It's funny to think about this now. Today it baffles me that I didn't write "Everybody Knows About Me" years earlier. The inspiration was right there. But the truth is, I wrote it when I did because someone with a greater sense of duty to his fellow humans jolted me out of my complacency.

New home for Everybody Knows About Me

A while back, Cinder Bridge recorded a song called "Everybody Knows About Me," about someone living with ME/CFS. We wanted to use the song to promote awareness about the disease, but didn't know where to begin.

A web search led me to Tom Hennessey, the activist who founded ME Awareness Day. I contacted him and asked for advice. Upon hearing the song, he offered to host it on his own site, RESCINDinc.org, and take donations for downloads.

Sadly, the site's been down for a few months now, probably because Tom isn't doing well. He's actually been very sick for a long time, so "not doing well" is a relative thing—he's doing even worse. I've resisted finding a new home for "Everybody Knows About Me," hoping the site would come back. There are other places I can put it, but none that will take donations.

Tonight I wanted to give someone a link to the song and decided, enough waiting. I just made the fully arranged and produced version of "Everybody Knows About Me" available for download on Myspace. It replaces the demo version that was up there before.

If RESCIND makes a dramatic reappearance, or if we hook up with another ME organization that would like to use the song for donations, maybe I'll take it off Myspace. In the meantime, anyone looking for "Everybody Knows About Me" can find it here:

myspace.com/cinderbridge

Chatting on the air

Thanks to everyone who tuned in to the Cinder Bridge interview on KXCI this Wednesday.

The whole thing went off much more smoothly than I expected. In general, I am not particularly good at coming up with witty responses in high-pressure situations. If I can get through one of these things without mispronouncing my own name, I consider it a success.

But Wednesday's Live at 5 wasn't a high-pressure situation at all. Instead of firing a succession of questions in our general direction, DJ Cathy Rivers just ... talked with us. It felt like we were simply continuing the conversation we'd started before the show, only now there were other people listening.

We also found out, before we went live, that Cathy Rivers' mother has ME/CFS. So she was more than happy to give some discussion time to "Everybody Knows About Me," our song about living with the disease.

The only thing I'd do differently, if I had it to do over again, would be to emphasize the most serious physical symptoms of ME/CFS -- for instance, the fact that people who have it tend to die earlier. Cathy Rivers said something about how sufferers have low cortisol, which makes it impossible for them to cope with stress. I riffed on that for a while. Now I'm hoping that listeners didn't take what I said the wrong way, thinking stress causes ME/CFS instead of the other way around.

For the record, listeners, stress doesn't cause ME/CFS. The disease is in no way, shape, or form psychological.

Other than that, everything went swimmingly. I can't wait for us to do it again. And I hope you enjoyed hearing us babble as much as we enjoyed babbling.

Before the broadcast

The more Ron the Drummer and I promote a Cinder Bridge event, the more nervous I get. What if it turns out we can't play at the last minute? What if the gig gets cancelled and there's no time to tell everyone?

We promoted the holy hell out of yesterday's Live at 5 radio interview. Through it all, I kept my fingers crossed. I hoped they wouldn't need to change the date on us again. I hoped I wouldn't come down with laryngitis. I hoped that if everything else went OK, I wouldn't forget all the words to our songs as we played live on the air.

Most of all, I hoped we wouldn't run out of time before we got to play "Everybody Knows About Me," about living with ME/CFS. I'd tried my hardest to get word out to the ME/CFS community that we'd be on the air with this song.

My worst fear almost came to pass.

Just before Ron and I were about to load up our equipment, he got a call from the station. Turns out KXCI's board was fried. They could still interview us and play songs from our album, Highways and Hiking Shoes, but we wouldn't be able to perform.

Talk about close calls. The station had a copy of our album, but not "Everybody Knows About Me." If they hadn't caught us before we hit the road, we would have left without it.

Compared to all the work and worrying, the actual interview was a breeze.

* * *

Next time: The actual interview.

A couple more broadcast notes

Two things I should mention before Wednesday's Live at 5 broadcast:

First, I've already said that this will take place between 5 and 6 p.m. What I failed to say is that this is 5–6 p.m. MST. So if you're in California, start listening at 5. If you're on Mountain Daylight Time, tune in at 6. If you're on Central Time, tune in at 7. If you're on the East Coast, tune in at 8 p.m.

Sorry, I realize that this is a ridiculous level of detail. It's just, listening to some radio show at the wrong time because I forgot about the whole time zone concept? That's exactly the kind of thing I would do.

Second, we plan to play "Everybody Knows About Me" -- our song about living with undiagnosed ME/CFS -- during this broadcast. Barring unforeseen scheduling weirdness, it will probably be the second of three songs we perform live. Time permitting, we hope to be able to talk a little about the song during the interview too.

So, if you blog about ME/CFS or other diseases in the same invisible illness boat, please, let people know about this. You and your devoted followers can tune in from wherever you are in the world by going here.

ME/CFS Awareness Day 2009

Today is ME/CFS Awareness Day. Last year, we marked the occasion by uploading a song called "Everybody Knows About Me" to our Myspace page. I wrote it from the perspective of someone suffering from undiagnosed ME/CFS, though it could just as easily apply to other chronic immunological and neurological disorders such as fibromyalgia, MCS/environmental injury, or chronic lyme disease.

Since then, we've made an updated version of "Everybody Knows About Me" available for download. You can get the song here for free, though a donation to the ME/CFS advocacy site that hosts it is encouraged.

You may be thinking, "What is ME/CFS, and why should I be aware of it?" I'll answer that question and others in a handy FAQ format. Much of this information is the same as in last year's post, but I've included a few updates.

What's ME/CFS?

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
  
• 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. Researchers have been making some progress, but this disease gets very little funding. And despite the considerable evidence that ME/CFS is biological in origin, much of the funding it does get goes toward questionable psychiatric research.

That's messed up. I wish there were some way I could help.

You can help in more ways than you know. Here are a few ideas:

• Give to an organization whose primary purpose is finding a cure for ME/CFS. Both the Whittemore Peterson Institute for Neuro-Immune Disease and IACFS/ME take donations.
  
• Write your congressman.
  
• If you have a friend with ME/CFS, make an effort to keep in touch. Your friend may not have the energy to call you, but he or she would probably love to hear from you.
  
• If someone you know makes a comment about how chronic fatigue syndrome is just laziness, don't let it pass. Explain that ME/CFS involves serious pain and real impairment, not just greater-than-average tiredness.
  
• Send "Everybody Knows About Me" to anyone who might benefit. That includes people who suffer from it and people who don't understand it. Again, you can download the song here. Once you've obtained it, make as many copies as you like and send it to as many people as you like.
  

Thanks for listening.

* * *

Update: Astute readers may have noticed that when I said "today" was ME/CFS Awareness Day, I got the day wrong. It's May 12, not May 11. Could've sworn I posted this after midnight, on the 12th. Oh well ...

Imaginary treatments: addendum and erratum

The addendum: an interesting (and heartbreaking) response to my post on placebos on Life as we know it.

Another concern for patients is those, like me, who suffer permanent physical damage from not getting the correct medication. I've been told I will never be well enough to return to full-time employment because I didn't get the proper treatment in the critical early phase of this relapse.

The erratum: I wrote that maybe the person who inspired "Everybody Knows About Me" (and pointed me to the original placebo article) was lucky, because at least his doctors were willing to say they didn't believe him. After reading my post, he said that actually, very few of his doctors had the balls to tell him what they really thought. Most just prescribed Motrin or something and encouraged him to come back.

Why. Why does anyone think this is OK?

Imaginary treatments for real diseases

Sometimes I count it as a victory when I manage
Just to drag my aching body out of bed
The doctors, mystified, could not produce an answer
So they told me it was all in my head

-- Everybody Knows About Me

The person who inspired the song "Everybody Knows About Me" pointed me to a New York Times article last night. According to this piece, half of doctors regularly prescribe placebos.

The most common placebos the American doctors reported using were headache pills and vitamins, but a significant number also reported prescribing antibiotics and sedatives. Although these drugs, contrary to the usual definition of placebos, are not inert, doctors reported using them for their effect on patients’ psyches, not their bodies.

The bioethicists are having a field day with this one. On the one hand, it's wrong for medical practitioners to lie. Patients trust doctors to know more than they do (though many with obscure diseases like ME/CFS often find themselves having to educate their own physicians), and to provide valid information and treatment. Prescribing medication that has no clinical effect on the illness is a clear betrayal of that trust. On the other hand, if the placebo effect actually works, then the doctor has in a sense provided real treatment ... right?

Well, not so fast. Scroll a few paragraphs down, and we find this telling quote:

Dr. William Schreiber, an internist in Louisville, Ky., at first said in an interview that he did not believe the survey’s results, because, he said, few doctors he knows routinely prescribe placebos.

But when asked how he treated fibromyalgia or other conditions that many doctors suspect are largely psychosomatic, Dr. Schreiber changed his mind. “The problem is that most of those people are very difficult patients, and it’s a whole lot easier to give them something like a big dose of Aleve,” he said. [Emphasis mine.]

Readers with fibromyalgia or ME/CFS or similar are at this point already throwing things at the screen, and don't need me to explain what's wrong with the good doctor's argument. But for those of you who are unfamiliar with fibro, here's a breakdown:

1. Fibromyalgia is a real disease. It is formally classified as such in the International Classification of Diseases under Soft Tissue Disorders.
   
   
2. Instead of bothering to do any actual research, Dr. Schreiber simply assumes his fibro patients are being "difficult."
   
   
3. He prescribes medication that not only doesn't help, but might cause harmful side effects. Fibromites have enough pain in their lives without also having to deal with gastrointestinal problems.
   
   
4. The doctor gets paid for dispensing treatment he knows to be clinically ineffective.

"Everybody Knows About Me" contains a passage describing how some medical professionals write off real pain and suffering as "all in your head" instead of admitting they have no idea what's wrong. That really happened to the guy I wrote the song about. Maybe he was lucky, though. At least the doctors who say you're crazy let you know where they stand. They don't trick you into going back to them instead of continuing the search for someone who will believe you ... and who will at least try to help.

Invisible, but not inaudible

"It's not so much what you don't know that can hurt you, it's what you think you know that ain't so."

-- Will Rogers

September 8–14 is National Invisible Chronic Illness Awareness Week. Its aim is to help healthy people understand what it's like to live with serious "invisible" diseases such as myalgic encephalomyelitis, fibromyalgia, multiple chemical sensitivities, lyme disease, Gulf War syndrome, and many, many others.

What makes an illness or disability invisible? Two things. First, the people suffering with it often drop out of sight. Your friends don't hear from you for a while, figure you've lost touch for the usual reasons friends do, and have no idea that your chronic pain or crushing fatigue prevents you from leaving the house most days. Second, if they do happen to see you again, you probably appear perfectly normal. Your disease hasn't caused you to break out in scary hives or turn blue. The very fact that you're out in public probably means you're feeling/functioning better than usual.

Chances are you've tried to explain what's really going on with you. But not everyone believes it: You could go back to work if you were willing to tough it out. You don't LOOK sick, so it must be all in your head ... or worse, you must be making it all up to get attention and a free disability check. So now you're not only stuck with constant pain, but you don't receive the support you'd get if you had diabetes, or multiple sclerosis, or some other "legitimate" disorder.

Want to combat this kind of prejudice? Here's something to try. Go to rescindinc.org/everybody.htm and download our song "Everybody Knows About Me." It's inspired by somebody who lived for many years with undiagnosed myalgic encephalomyelitis (also known as CFIDS, also known as "chronic fatigue syndrome"), but it could just as easily apply to many other invisible illnesses.

If you like the song, send the link to someone suffering from an invisible illness to let them know they aren't alone. Send it to someone who believes people with invisible illnesses are whining hypochondriacs. Send it to someone who doesn't quite get how it feels ... but would like to.

Everybody Knows About Me

Finding cures for these devastating diseases will cost billions. In the meantime, compassion is free.

Miscellany before departure

Tomorrow I depart for a week-long vacation. I'll have Internet access, but likely not much to write about, so I'll leave you with a couple of things before I go:

E-mail is fixed. Yay! Now I can resume my contacting of ME advocacy sites ... um, after I get back from vacation.

Speaking of advocacy, I have sign-up information for the newsletter that gave a mention to RESCIND and "Everybody Knows About Me." If you'd like to subscribe, just pass a note to grannycfs@aol.com. Be sure to put "ME/CFS Advocacy" in the subject line so your message doesn't accidentally get deleted.

If I don't check in before I return home, have a great week.

E-mail is down

My e-mail account has been experiencing technical difficulties since Friday morning. It's been completely inaccessible for most of that time. Just now I got in long enough to read one message and compose a reply ... but I'm not sure I was able to send the reply successfully.

This is so frustrating. Normally I wouldn't care if I had to go a weekend without checking e-mail -- normally I don't get much beyond Google alerts, forwarded jokes, and mailing list postings. But now I'm corresponding with a couple of real live human beings about "Everybody Knows About Me," and I've attempted to contact someone else about using the song to raise funds for ME research. These are not people I want to blow off.

Anyway, if you wrote to me and haven't heard back, that's why. My apologies.

Viral advocacy

Googling our band name last week, I stumbled across a post on Behind the Surface, an ME blog, that mentioned "Everybody Knows About Me":

At the moment [RESCIND has] got a "Friend-raiser" going on that includes a song about ME by Susan Wenger, of the band Cinder Bridge (yeah, I hadn't heard of them before now either) that you can download. The song does feel very ME-ish. Very slow and heavy. Indeed as I was listening to the opening verse, I thought, hell, has this woman been spying on me but got the apartment floor wrong?

It was exceptionally cool to hear someone with ME affirm that the lyrics (at least in the first verse) are accurate. But you know what felt even more amazing? The fact that she found "Everybody Knows About Me" through no direct efforts of the band.

Then, this morning, I got e-mail from a woman who lives in North Carolina. She'd read about "Everybody Knows About Me" in an ME newsletter and wanted to know where she could buy the song.

And I thought, newsletter? Yeah, I've been planning to contact some ME newsletters, but I haven't done it yet ...

It appears that our little advocacy song is s-l-o-w-l-y going viral. This shouldn't surprise me. It's been our goal from the beginning. Still, it blows my mind just a little bit to connect with people who weren't even looking for us ... who had never heard of us before now.

The price of a song, the value of a cause

Back when I first talked to the RESCIND guys about letting them use "Everybody Knows About Me" to raise money for ME awareness/research, the assumption was that they'd put a buy button up for $5 or so. Jerry, the webmaster, is the one who came up with the idea of letting people donate anything -- or nothing. He didn't believe people would stiff a charity. I thought this a little naive, but it didn't matter. The people who donated larger amounts would hopefully compensate for the freeloaders.

Yesterday, Jerry e-mailed me with the news that "Someone thought the song was worth $20!"

So cool. Of course, what he really meant was, someone thought the cause was worth $20. I'm pretty sure nobody would pay that much for a song, regardless of how good it is.

For fund-raising purposes, I hope RESCIND gets as many of those big donations as possible. But for awareness-raising purposes, I'm interested in the people who don't know or care enough about ME to part with more than the obligatory dollar or two. Maybe now I'm the one who's being naive, but I hope they listen to "Everybody Knows About Me" and come away with a better understanding of what it's like to suffer with the illness, and why it's not okay to dismiss it as "yuppie flu."

P.S. Thanks to all the readers here who donated. You rock!

Everybody Knows About Me: Released!

*drum roll*

"Everybody Knows About Me" -- the fully arranged, polished version -- is now available:

www.rescindinc.org/everybody.htm

Ron and I are letting RESCIND, a CFIDS/ME awareness site, use our song to help raise money for the cause. The deal is, you can download "Everybody Knows About Me" for free, and if you think the song and/or the cause is worth it, there's a donate button at the bottom of the page. You choose how much you want to donate.

(If you're wondering what on earth CFIDS/ME is, you can find a brief summary here.)

Eventually "Everybody Knows About Me" will also be available on places like iTunes, and hopefully other CFIDS/ME sites will feature it as well. But if you donate here, all proceeds go to RESCIND's "friend raiser."

Cover art for "Everybody Knows About Me"

When we first started making plans to get awareness-raising song "Everybody Knows About Me" out there, I never gave any thought to artwork. We weren't going to release a whole album; we were only going to make the one song available as an MP3 through sites like iTunes and Amazon.com. No physical product to slap a cover on, no cover art.

My logic made perfect sense until I remembered that iTunes et al always displayed covers next to their wares. I didn't know if they absolutely required a visual, but the buy page might look strange without it.

At around the same time, I discovered RachelCreative, a blog by an artist who has CFIDS/ME. While paging through her old posts, I discovered a self-portrait that she doodled "after an irrational flush of frustration." I contacted her, one thing led to another, and ...


I love the rawness and the energy of this piece. I also love how it thumbnails -- that is, how it will look when displayed in search results:


It will take around four to six months for "Everybody Knows About Me" to start showing up on the usual download sites. We'll let y'all know the hot second it's available. In the meantime, I'm just going to stare at the "cover" art and grin a lot.