Monday, May 12, 2008

A Song for CFIDS: Everybody Knows About Me

Today is CFIDS Awareness Day. To mark the occasion, we've uploaded a song called "Everybody Knows About Me" to our Myspace page. I wrote this from the perspective of someone suffering from undiagnosed CFIDS, though it could also easily apply to undiagnosed fibromyalgia, MCS/environmental injury, lyme disease, or many other so-called invisible illnesses.

You can find the song here. (Click the "Everybody Knows About Me" link if it doesn't start playing immediately.)

You may be thinking, "CFIDS? What the heck is that?" I'll answer that question and others in a handy FAQ format:

CFIDS? What the heck is that?

It stands for chronic fatigue and immune dysfunction syndrome. 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.

CFIDS is also known by the name myalgic encephalomyelitis (ME). You've most likely heard it referred to as chronic fatigue syndrome.

Oh, chronic fatigue syndrome! Yeah, I've heard of that. A friend of mine says she has it, 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 CFIDS 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.

I don't have CFIDS, but I have seen more than a few bad days up close. They're not pretty.

Is there a cure?

No. And at the rate research for a cure is being funded, it's going to be a while. In 2007, more money went to research on hay fever than CFIDS.


Yeah. If you'd like to donate to an organization whose primary purpose is finding a cure, go here.

How else can I help?

Write your congressman. If you have a friend with CFIDS, 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. Listen. Sympathize. If someone you know makes a comment about how chronic fatigue syndrome is just laziness, don't let it pass. Explain that CFIDS involves serious pain and real impairment, not just greater-than-average tiredness.

Oh, and if you know anyone who might benefit from hearing "Everybody Knows About Me," send the link. But please don't send it to absolutely everyone in your e-mail address book. Spam is annoying, no matter how noble the cause.

Thanks for listening.

1 comment:

Anonymous said...

Great post about CFIDS. Thanks for taking the time to write about it and in such an accessible way too. :o)

I've added your post to our list of Blogging for ME/CFS Awareness.