ME/CFS and the perils of ignorance, part II: When the authorities get involved

People with ME/CFS, fibromyalgia, chronic lyme, MCS, and other invisible illnesses tend to accumulate bad experiences with the medical establishment. Some doctors will tell them there's nothing wrong -- the symptoms are all in their head. Less forthright doctors will give them a placebo and send them on their way.

That sick people have to endure this kind of casual dismissal is bad enough. But the consequences of medical prejudice can be much, much scarier.

Here are a couple of recent examples.

Brian Nicholson

Brian Nicholson, who lives in the UK, has ME/CFS and postural orthostatic tachycardia syndrome (POTS). He has been involuntarily committed to a mental hospital for "abnormal illness beliefs in relation to ME."

According to Simon Overton, who maintains a Facebook page about this, Nicholson was drinking a lot of water in an attempt to treat his POTS. Though he was monitoring his fluid intake/output and his sodium levels, those who committed him claim his water intake was excessive, and that he is a danger to himself.

Overton says he had been doing well back when he was on IV saline -- and not drinking too much water when he was on it.

You can read more about Nicholson here.

Ryan Baldwin

16-year-old Ryan Baldwin has ME/CFS, in addition to severe autonomic dysfunction, a progressive heart conduction system block (LBBB) with right axis deviation, and mitochondrial disease. The Department of Social Services in North Carolina removed him from his home, accusing his parents of "fictitious disorder by proxy."

Apparently the diagnoses Ryan received from Johns Hopkins, the Mayo Clinic, and other institutions didn't impress them much.

Ryan has been in foster care for four months. He isn't allowed to use his power wheelchair.

You can read more about Ryan Baldwin here and here and here.

ME/CFS and the perils of ignorance, part I: A trip to the emergency room

Think living with a debilitating, incurable disease is tough? Try living with a debilitating, incurable disease while dealing with people who don't believe you have one.

Myalgic encephalomyelitis, aka ME/CFS, causes considerable pain, post-exertional malaise, cognitive impairment, and crushing exhaustion that is not relieved by rest. Despite solid scientific evidence that this is a physiological condition, many continue to believe that it's hypochondria, a psychosomatic disorder, or just plain laziness.

A typical example: Someone I know with ME/CFS -- the guy who inspired my lyrics for Everybody Knows About Me -- developed a lung infection. After attempting to deal with it on his own for a few weeks, he called his doctor's office. They told him (rather forcefully) to haul ass to the emergency room.

Here's what happened, in his own words:

I went to the emergency room for a potentially quite serious bacterial infection. During intake, when they asked me to tell them what major diseases I had, I made the error of including "myalgic encephalomyelitis." I did so because it is a (possible) explanation for (some of) various health issues.

Many hours of waiting¹ later, it turned out that the doctor had never heard of the disease, and had looked it up on emedicine.com.

Those of you who have ME will be familiar with the results.

The slightly suppressed smirk and the leaning-to-one-side posture that says, "I should really be doing important things, but this is slightly amusing, so I will waste a few minutes here before getting back to doing them." Upon being told that one is essentially bedbound on every day except for emergencies, the accusation of "you were able to make it here with no problem, weren't you? [So therefore you can go anywhere you need to anytime]" The visible show of patience while refusing to take strong suggestions of a staph aureus infection seriously. The suggestion that it might be a cold. And of course the "you look fine."

The self-criticism for making the mistakes one makes, due to the fog, to the toxic environment, to being vertical for that long for the first time in more than a year. Mistakes like forgetting to point out stupid defensive facts like "I had to take stimulants to be here and my body will be paying for this." Yet knowing that they still would not believe.

The self-criticism for mentioning the disease.² The well-founded concern that the permanent computer record will now poison future emergency room visits. The futile, desperate wondering whether it's possible to expunge that stigma after the fact, now that it has been proven how prejudiced people can be.

The wondering what to do about the infection now.

And, above all, the well-founded concern that the X-rays, taken at great personal and financial cost, received no more than a cursory glance.³

A cursory glance.

[1] Often with no place to lie down provided. This is extremely difficult for somebody who can realistically be vertical only for the length of time it takes to go to the bathroom. If you were an unrealistic idealist, you might harbor the ridiculous notion that a hospital would understand this.

[2] If they have not heard of it, knowing it won't help them treat you. If they have heard of it, they have heard harmful misinformation. Nearly zero chance of the information being used wisely to heal you.

[3] This doctor casually told us a story about how those in his sub-field often just (metaphorically) kick positive X-ray/CT/MRI results "under the table" if they are not relevant to what they are asked to report on. It was clear that this was his own attitude.

* * *

Me again.

Those of you who have never dealt with unbelieving medical staff might be skeptical. "Maybe he saw what he expected to see," I hear you cry.

I was there. I took a vacation day to drive him to the hospital and stay with him while he talked to various medical professionals, including the doctor he spoke of. He didn't imagine it.

The doctor wasn't mean. He didn't come right out and proclaim ME/CFS was psychological. He didn't point and laugh. But his body language had changed. His tone suggested ... not a sneer, exactly, but a "you can't put anything over on me" cockiness.

Oh, and he said that sending us to the emergency room was an "abuse of the system."

Sadly, this was a typical ER visit for someone with ME/CFS, fibromyalgia, or other invisible illness. Even more sadly, it was a trip to Disneyland compared to what some sufferers face. Next up: ME/CFS and the perils of ignorance, part II: When the authorities get involved.

Awareness

An interesting fact about white people is that they firmly believe that all of the world’s problems can be solved through “awareness.” Meaning the process of making other people aware of problems, and then magically someone else like the government will fix it.

--Christian Lander, Stuff White People Like

If you had told me ten years ago that I would be actively involved in an awareness campaign -- for anything -- I would have laughed. I always felt they were pointless. A poster or bumper sticker with one of those ubiquitous ribbons would hit my line of vision and I'd think, "Yeah, OK. You have succeeded in bringing [name of disease or social issue] to the forefront of my consciousness. I am now aware. How exactly does that help?"

I wish I could feel that way about myalgic encephalomyelitis (aka ME, aka ME/CFS, aka "chronic fatigue syndrome"), a debilitating disease that causes considerable pain, crushing fatigue, and shorter life expectancy. Instead of raising awareness, I want us to raise money to find a cure.

But it doesn't work like that. Money's tight, and if we're to convince anyone to part with it through donations or taxes, they need to understand that ME/CFS is a real thing. Despite popular misconceptions, it's not just being tired, it's not hypochondria, and it's not psychosomatic.

Awareness doesn't amount to an instant cure, of course. But it makes a big difference to those who are waiting for one. With a better-informed populace, people with ME/CFS wouldn't have to ...

• deal with skepticism and scorn from their own friends and family.
  
• explain for the upteenth time how they really do feel sick, even though they don't look sick.
  
• educate their own doctors about the disease, or deal with doctors who think it's all in their head.

So. Happy ME/CFS Awareness Day. Stay tuned: later I'll talk a little more about the consequences of ignorance ... and just how deep the ignorance goes.

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 ...

Cinder Bridge at the Folk Festival: The visual

Here's a picture of us at the Folk Festival. I have no idea who took it.


Left: Ron the Drummer, playing drums and enjoying the scene. Right: Susan the timid keyboardist, hiding behind the speaker.

Introducing ME/CFS

It's always tough to create a 25-minute set list. So many tunes, so little time. But when we were choosing songs for last weekend's Tucson Folk Festival, one had an automatic in: Everybody Knows About Me, the closest thing we've got to a protest song. We figured folkies would respond well to it.

I introduced the song with my standard rap:

"I wrote this next song about someone living with undiagnosed myalgic encephalomyelitis. If you've never heard of that, it's probably because most people refer to it as as 'chronic fatigue syndrome,' which is a STUPID name for a very serious disease."

One neat perk of playing the Folk Festival is that the people running sound record everyone's sets. They handed us a CD of ourselves right after we finished. So, first chance I got, I played the CD for the person who inspired "Everybody Knows About Me." He couldn't come out to see us because he was too sick. He rarely leaves the house.

He listened. After he complimented us on a job well done, the following conversation ensued (extremely condensed/paraphrased):

Him: "You shouldn't mention 'chronic fatigue syndrome.' It gives people the wrong idea. Just call it myalgic encephalomyelitis."

Me: "How will that help? No one knows what myalgic encephalomyelitis is.* The audience would sympathize with people who have ME, then continue to treat people with chronic fatigue syndrome badly because those people are just tired and lazy."

Him: "They'll make the connection. They'll understand that it's wrong to be prejudiced regardless of what the diagnosis is."

Me: "Eh. I doubt it."

What do you think? Do I shoot our cause in the foot by invoking the very name that promotes the bad stereotypes? Or is it better to bring the stupidity of that name out into the light?

* * *

* For those of you who are reading this from somewhere other than the U.S., the vast majority of Americans have never heard of ME. When I say "myalgic encephalomyelitis," the response is always a blank stare, followed by, "What's that?"

Bingeing at the folk buffet

I've been busy for a while with work and other responsibilities. Too busy to go out and see a lot of live music. So when this year's Tucson Folk Festival rolled around, I figured it would be the perfect opportunity to make up for lost time.

I cleared my schedule. Made arrangements. Logged in over 18 hours at TFF 2009.

And came to a couple of realizations.

First, I need to get over the assumption that I'm the only musician out there who's too busy to hear other people play every weekend. While bopping around from stage to stage, trying to see everyone I liked, I ran into more than one musician who was trying to do the same thing.

That said, if I can find a way, I'd like to make live music a more frequent occurrence in my life. Not every weekend, maybe not even every month, but more than now. Because the second thing I learned is that trying to cram a year's worth of performances into one weekend is exhausting. No matter how good everyone is, no matter how fun they are to watch, eventually you just want to go home.

And that said, I'm already looking forward to Tucson Folk Festival 2010. Exhausting or not, it's always a good time.

See you next year.

Singing for folks

As I was preparing for our Tucson Folk Festival debut Saturday morning, my boyfriend asked a question: What qualifies a band or artist as being "folk"? More specifically, what criteria do the people running the TFF use when screening applicants? Cinder Bridge doesn't usually bill itself as a folk band, but they let us in.

My answer: I have no idea. We don't do traditional folk, and we don't do political folk. There's not a guitar player to be found in our band, so we don't sound like stereotypical folk. My best guess? We're acoustic (or at least my keyboard competently mimics an acoustic instrument), and we're interested in participating in an event that has the word "folk" in it ... and that's good enough for them.

We got a good response when we played, so it seems to have been good enough for our audience as well. Wahoo!

I think "Folksinger Song," by local artist Brad Fritz, sums it up nicely:

I really don't know if I am a folksinger
But I sure do like singing for folks