Nominate ME/CFS for a cube grenade

A few weeks ago, I wrote about how Hugh McCleod is creating a free cube grenade for the business or cause he deems worthiest. I nominated ME/CFS.

Now Hugh is opening the nomination up to friends of people with the business or cause. The catch is that the friends can't have a stake in the outcome.

So, if you do NOT have ME/CFS yourself, please go to gapingvoid.tumblr.com/submit and nominate ME/CFS. If you need help articulating the reasons it should win, here are a few bullet points for inspiration:

• ME/CFS causes chronic pain, crushing exhaustion, early death, and a host of other misery-inducing symptoms. There is no cure.
  
  
• Despite the severity of the disease, most people think of "chronic fatigue syndrome" (its more common name) as just above-average tiredness.
  
  
• Despite the severity of the disease, it's received less funding than hay fever.
  
  
• Much of the little funding ME/CFS has received has gone to research on cognitive behavioral therapy (not terribly useful) and graded exercise therapy (harmful to people who actually have this disease).
  
  
• There may be a link between ME/CFS and a retrovirus called XMRV. Two new studies on this were set to be published: one found the link, the other didn't. Both studies were put on hold. The negative paper was published soon after, despite significant flaws. The positive paper is still on hold.
  

Please, please find the time to do this. ME/CFS isn't the only worthy cause out there, but it's absolutely one of the most neglected.

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.