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 ...

Bias in the New Scientist

Last month, the New Scientist published an interview with psychiatrist Simon Wessely. Wessely has made a name for himself promoting the view that people with ME/CFS -- as well as Gulf War syndrome, fibromyalgia, and irritable bowel syndrome -- are just thinking themselves sick.

In his own words:

Often there is an organic trigger like glandular fever. That's the start, and usually most people get over it, albeit after some weeks or months. But others can get trapped in vicious circles of monitoring their symptoms, restricting their activities beyond what is necessary and getting frustrated or demoralised. This causes more symptoms, more concerns and more physical changes, so much so that what started it all off is no longer what is keeping it going.

You can read the whole article here. The telling bit is not so much in anything it says, but in what it doesn't say:

1. Though Wessely states that there's no organic cause beyond the "infective trigger," he provides no evidence to back up his claim.
   
   
2. Wessely fails to mention the mountain of evidence that ME/CFS is a biological disease.

And then it gets interesting.

Following the Web version of this article are, at this writing, 562 comments. The thread began on March 15 and it's still going. The vast majority of commenters vehemently disagree with everything Wessely said. If you don't have the hour or two it would take to carefully read all the comments, here's a sampling.

From Michael Tomlinson, in response to Wessely's assertion that severely affected ME/CFS sufferers need to exercise:

Most of us have tried anything they could. We've tried exercising, physio, chiro, massage, weird diets, acupuncture... you name it! ... All exercise did for me was add to the number of limbs that are inflamed; and this was carefully supervised by a fully trained personal trainer. I had to stop after 18 months or I wouldn't be able to use my arms at all! ...

I was incredibly fit before - I rowed in the head of the river, did competitive downhill skiing, rock climbing at a high level, bike riding, swimming, and more. I can no longer do any of those activities. Can you really understand how horrible it is to be unable to do those things? That's why I'm depressed! It's NOT the other way around.

From Balbuie, challenging New Scientist to interview biomedical scientists about the disease:

I could suggest scientists like Dr Judy A. Mikovits, Director of Research at the Whittemore Peterson Institute for Immune Disease in Universtiy of Nevada, Reno. Here is some of WPI's latest work:

Cytokine Volume 43, Issue 3 September 2008, page 245, Special Issue, Abstracts and Reviews

"Our analysis has revealed distinct pathogen associated signatures with significant 5-200 - fold differences between patients and controls for the inflammatory cytokines Il-8, IP-10, MIP-a and MIP-1b, as well as the procytokines IL-6, TNFa and Il-1b ..."

And also Dr Jonathan Kerr, Sir Joseph Hotung Clinical Senior Lecturer in Inflammation, St George's University of London who has published several groundbreaking papers on gene expression in ME/CFS.

So here's where I'm confused: Why is New Scientist presenting the Wessely angle exclusively? As the above commenter noted, they could have found any number of scientists who would have been happy to provide an alternate view.

If they couldn't be bothered to procure quotes from other scientists, how about a few probing questions for their subject? For instance, how does Wessely respond to the biomedical research demonstrating that the disease is organic? Or, if we know that there are legitimate serious chronic illnesses -- multiple sclerosis, for example -- what makes ME/CFS different?

Who knows. Maybe New Scientist just figured that stories about how people's own minds make them sick are sexier than stories about pathogens and inflammatory cytokines. But standing by their flimsy, biased work after getting hammered by their readership for a solid month? It doesn't make sense.

So what now? Will it help for us to add to the still-growing list of comments? To contact an organization like MediaWatch and try to get them to nudge the journal into doing the right thing?

Your suggestions are welcome.

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.

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."

The elusive safety net

Most of the people I know with CFIDS/ME, fibromyalgia, environmental injuries, or other invisible illnesses have some kind of support system. They might be suffering terribly, but they at least have enough of a safety net that they won't soon be homeless on top of everything else.

Well, today I found out that someone I've been corresponding with via e-mail is going to be out on the street soon. His family doesn't take his illness seriously, and they're not going to help him. The people who might be inclined to help him are as broke and sick as he is.

I don't know this guy well. Maybe his family is just particularly dysfunctional. But I suspect they wouldn't be treating him as badly if he had cancer, or AIDS, or multiple sclerosis. It's stories like these that made me want to write "Everybody Knows About Me." If the song can change one person's mind, it will have done a lot of good.

Still, my efforts feel horribly inadequate today. No song is going to ensure that somebody gets food and shelter.

Does anybody know of emergency resources for someone in a situation like this? I don't think a person with CFIDS/ME would do very well in a homeless shelter.

More awareness for everyone

Thanks to everyone who linked back to either the CFIDS Awareness Day post here or "Everybody Knows About Me" on Myspace: I Learned Something Today, Molly.com, RachelCreative, Saving My Sanity, and Songs to a Midnight Sky. If you're interested in learning more about what CFIDS is like from someone who has it, RachelCreative wrote an essay about it for Awareness Day and linked to many others who did the same.

The responses to "Everybody Knows About Me" have been extremely positive. This is ... a relief. Anytime I write a song, I fret about making the lyrics as good as they can be, but the truth is that getting it wrong doesn't generally have substantial consequences. It's just a song, right? Writing about the devastating effects of a widely misunderstood illness I've witnessed but never experienced, that kicks the level of importance up a few dozen notches. Fail to convey some essential piece I was going for, and the song could do more harm than good.

Someone I know who has CFIDS did give EKAM a pass before it saw the light of day. Nevertheless, it's reassuring to get good reactions from people who don't know me personally.

A Song for CFIDS: Everybody Knows About Me

Today is CFIDS Awareness Day. To mark the occasion, we've uploaded a song called "Everybody Knows About Me" to our Myspace page. I wrote this from the perspective of someone suffering from undiagnosed CFIDS, though it could also easily apply to undiagnosed fibromyalgia, MCS/environmental injury, lyme disease, or many other so-called invisible illnesses.

You can find the song here. (Click the "Everybody Knows About Me" link if it doesn't start playing immediately.)

You may be thinking, "CFIDS? What the heck is that?" I'll answer that question and others in a handy FAQ format:

CFIDS? What the heck is that?

It stands for chronic fatigue and immune dysfunction syndrome. 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.

CFIDS is also known by the name myalgic encephalomyelitis (ME). You've most likely heard it referred to as chronic fatigue syndrome.

Oh, chronic fatigue syndrome! Yeah, I've heard of that. A friend of mine says she has it, 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 CFIDS 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.

I don't have CFIDS, but I have seen more than a few bad days up close. They're not pretty.

Is there a cure?

No. And at the rate research for a cure is being funded, it's going to be a while. In 2007, more money went to research on hay fever than CFIDS.

Damn.

Yeah. If you'd like to donate to an organization whose primary purpose is finding a cure, go here.

How else can I help?

Write your congressman. If you have a friend with CFIDS, 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. Listen. Sympathize. If someone you know makes a comment about how chronic fatigue syndrome is just laziness, don't let it pass. Explain that CFIDS involves serious pain and real impairment, not just greater-than-average tiredness.

Oh, and if you know anyone who might benefit from hearing "Everybody Knows About Me," send the link. But please don't send it to absolutely everyone in your e-mail address book. Spam is annoying, no matter how noble the cause.

Thanks for listening.