Friday, June 11, 2010

ME/CFS needs a cube grenade

I became acquainted with the work of cartoonist Hugh MacCleod when I read his book Ignore Everybody. Having thoroughly enjoyed the book, I found my way to his blog, Gaping Void, and discovered that he also draws cube grenades.

You don't know what a cube grenade is unless you're familiar with MacCleod, as he made the concept up. Essentially it's like a mission statement, only in the form of a drawing and with a whole lot more attitude.

Yesterday he announced that he was going to give away one of these babies for free. Quite a deal, given that they usually go for thousands of dollars. Anyone who wants to be considered, he said, should submit their idea to him in 500 words or less.

Well. I happen to know a worthy cause that could really use the attention. Here's what I told him.
ME/CFS needs a cube grenade

You've probably never heard of ME/CFS, which is why it needs a cube grenade. Here's a brief introduction, in handy FAQ format.

What the heck is ME/CFS?

A disease. 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
  • Greater susceptibility to fatal cancers and heart failure
  • 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?


Any hope for a cure sometime soon?

Hard to say. The Whittemore Peterson Institute for Neuro-Immune Disease recently found a link between this disease and a retrovirus called XMRV. However, it's not yet known whether XMRV causes ME/CFS in the same way HIV causes AIDS, or whether it's an opportunistic infection.

More research is needed. Problem is, the disease still gets almost no real funding, largely due to the perception that it's not a real thing. Much of the money it does get has gone toward questionable psychological research. WPI doesn't receive ANY federal funding yet.

That's messed up.

Yep. A cube grenade could really help the cause. A cube grenade would be a direct and powerful way to show:
  • It isn't just being tired.
  • It isn't imaginary.
  • Just because sufferers often look fine doesn't mean they feel good.
  • Bad things do happen to good people. If you blame the victim because it makes you feel better, you're part of the problem.
Change the culture surrounding ME/CFS, and you change sufferers' lives. In the long term, it encourages funding. More immediately, it increases the likelihood that sufferers will meet with heartfelt sympathy from the people closest to them rather than skepticism and cruel rejection.


Laurel said...

I'm going to say it again: You are awesome, Cinderkeys. Seriously. You rock. :)

Jill said...

You are awesome!

John Wenger said...

Here's a little constructive criticism. When you explain what ME/CFS means to someone who doesn't know what it means, you should point out that ME and CFS mean the same thing, that CFS is the expression familiar to most people, but that ME is preferred, and explain why. It might also be a good idea to explain what the expression myalgic encephalomyelitis means, starting with the Greek roots (I need this explanation myself).

Of course this does make the pitch longer, but it is helpful information.

cinderkeys said...

Laurel & Jill: Aw, I'm blushing. I don't take compliments well, so save the telling me I'm awesome for when we actually get a cube grenade.

Dad: Even if I'd had more than 500 words to do this, adding the etymological details would be a bad idea. Our audience is (most likely) someone who knows nothing about the disease. I want to get in, tell him the important stuff, and get out. He can look up the words if he's that curious about the derivation.

Also, ME and CFS may refer to the same disease, but they don't mean exactly the same thing. They're competing terms. Throwing them together is both a compromise and a way to make sure that the people who call it "ME" and the people who call it "CFS" know what we're talking about. And that's another post altogether. :)

Lou Cheese said...

Wow. I had never heard of Hugh MacLeod before, but that is some funny stuff.

cinderkeys said...

I know! If it were in our budget, I'd commission him to do a Cinder Bridge cube grenade.