I first learned about Chronic Fatigue Syndrome in 8th grade, when my boyfriend’s mom owned a popular local fitness program and she also suffered from Chronic Fatigue Syndrome.  I remember that it was a condition not widely understood and it was a huge deal with there was a write-up in our local paper about her and about Chronic Fatigue Syndrome.  All I can remember was thinking, “This is me. This is what I’ve been dealing with my whole life.”  Yes, I was all of 12/13 years old at the time, but I’ve been chronically tired my whole life. For real. No exaggeration. My dad still talks about how I slept through Europe.

Sure enough… I was diagnosed with CFS in high-school and still suffer from debilitating fatigue to this day.  It’s a chronic issue, horribly scary at times (ex. when driving, taking care of children, etc.) and just plain sucks when you need to get crap done.  I’m glad to see that CFS is finally getting the recognition it deserves, but I’m not sure that I agree with a new name.  I think the name is just fine, but that’s my opinion.

“WASHINGTON >> Doctors are getting a new way to diagnose chronic fatigue syndrome — and influential government advisers say it’s time to replace that hated name, too, to show it’s a real and debilitating disease.

The Institute of Medicine on Tuesday called on doctors to do a better job diagnosing an illness that may affect up to 2.5 million Americans, and it set five main symptoms as the criteria.

And the IOM’s choice of a new name — Systemic Exertion Intolerance Disease, or SEID — reflects a core symptom, that exertion can wipe patients out.

“This is not a figment of their imagination,” said Dr. Ellen Wright Clayton of Vanderbilt University’s Center for Biomedical Ethics and Society, who chaired the IOM panel. “These patients have real symptoms. They deserve real care.”

Here are some things to know about the disorder:

WHATEVER IT’S CALLED, WHAT IS THIS ILLNESS?

Its hallmark is persistent and profound fatigue where, on a bad day, a simple activity like grocery shopping can put someone to bed. It’s often accompanied by memory problems or other symptoms.

GETTING DIAGNOSED HAS LONG BEEN A PROBLEM

Between 836,000 and 2.5 million Americans suffer from the disorder, and most have no formal diagnosis, Tuesday’s report estimated.

Patients flooded the IOM with stories of years of misdiagnosis or even being dismissed by skeptical doctors as having a psychological problem instead. There’s no medical test for the disorder, leaving doctors to rule out other possible causes for the exhaustion. No one knows what causes it.”

To read more, please visit: Chronic Fatigue Syndrome being viewed as a disease