Monday, July 5, 2010

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 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.


John Wenger said...

Damnit, Susan, once again you forgot to spell out what the ME in ME/CFS stands for, and since you are one of the only people in the world who can remember what the initials stand for, no one can write the letter unless we only use the initials. But I doubt the recipient will know what we are talking about.

cinderkeys said...

Myalgic encephalomyelitis. And given that NOBODY WILL REMEMBER THAT, does it matter?

John Wenger said...

I should think it would matter if what you are trying to do is to get someone to give money to the cause of research on myalgic encephalomyelitis.