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?

No.

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.

Sex and cash

Years ago I met a fantasy/science fiction writer who had recently published a Star Trek novel. I watched Star Trek: Next Generation faithfully, and I'd met my share of hardcore Trekkies, so my first assumption was that he must be a big fan.

No, he said, not particularly.

At the beginning of his career, the writer explained, he decided that he would support himself by writing books. No day jobs for him. Just books. The money he earned from Star Trek novels and the like allowed him to write the stories he really wanted to write.

I was incredibly impressed that he'd been able to pull this off. Making a living as a novelist is well-nigh impossible.

Still, I wondered if I would make the same decision in his shoes.

* * *

A month or so ago, I read a short book that came highly recommended by Derek Sivers, the original founder of CD Baby. The book, Ignore Everybody by Hugh MacLeod, contained unconventional advice to those of us who pursue creative endeavors.

I found most of his tips insightful, but one of my favorites was "keep your day job."

The creative person basically has two kinds of jobs: One is the sexy, creative kind. Second is the kind that pays the bills. Sometimes the task at hand covers both bases, but not often. This tense duality will always play center stage. It will never be transcended.

MacLeod calls this his "sex and cash" theory: one way or another, you'll always have to balance your need to support yourself (cash) with your desire to do the creative stuff you like (sex).

Reading this made me feel better about myself and my life.

Because eventually I did find myself in my writer friend's shoes. I started writing songs, bought a keyboard, joined a band ... and kept my day job. Why kill myself trying to find work as a lounge pianist, or as a member of a cover band, playing songs I didn't care for, when I already had a way to support myself?

In the end, keeping the day job didn't mean I was selling out somehow. It meant the opposite. It meant I could focus on the music I wanted to make rather than singing the equivalent of Star Trek novels.