First as a journalist and now as a health communicator, I have
always stressed that words are important. How we use words, when we
use them, and most importantly, which words we use can have a
significant impact on a person's ability to understand and use
information. This is especially important when you're talking about
The words we use when talking about health are so important
because certain words carry more weight and are perceived
differently. For instance, consider the words "condition" or
"syndrome" verses the word "disease." All too often, when something
is termed a condition or syndrome it is not considered as serious.
This is especially true for
chronic fatigue syndrome or other similar conditions for which
there is no clinical diagnosis.
Chronic fatigue syndrome affects up to 2.5 million Americans.
Long dismissed by even professionals in the medical community as a
psychological condition or a made up syndrome, chronic fatigue
syndrome is characterized by extreme fatigue that cannot be
explained by another medical condition and does not improve with
any amount of rest. For people who suffer from chronic fatigue
syndrome, this lack of recognition and understanding often leads to
years of frustration with little relief from the symptoms.
However, the narrative surrounding chronic fatigue syndrome took
an important step forward earlier this month when an Institute of
Medicine (IOM) report argued that "the syndrome is a real,
physical disorder, with a particular set of diagnostic criteria."
Moreover, the IOM report proposed a new name--systemic exertion
intolerance disease--which it believes better reflects the extreme
exhaustion experienced by people with chronic fatigue syndrome.
Co-author of the report, Dr. Peter Rowe noted that the proposed
renaming "really describes much more directly the key feature of
the illness, which is the inability to tolerate both physical and
A no less important goal with the suggested name change is to
challenge the stigma that often surrounds chronic fatigue syndrome.
It may seem like a small step, and if the new name is adopted, it
may take some time for it to have a positive effect. However, it's
an important step for those who have worked so hard to increase
awareness and education about chronic fatigue syndrome.
The medical community does not fully understand the cause of
chronic fatigue syndrome, and there is no cure or even medication
that effectively treats the symptoms. But it is so important to
understand that this disease is about more than feeling overly
tired, which happens to all of us at times. People with chronic
fatigue syndrome are often unable to perform daily tasks, and the
most severe cases leave people unable to work or leave their
As health communicators, it is our duty to move this
conversation forward and advocate on behalf of those for whom there
is no blood test to confirm that there is, indeed something
Just Tired or Something Larger?
According to Mayo Clinic, chronic fatigue syndrome has the
following official signs and symptoms:
- Loss of memory or concentration
- Sore throat
- Enlarged lymph nodes in your neck or armpits
- Unexplained muscle pain
- Pain that moves from one joint to another without swelling or
- Headache of a new type, pattern or severity
- Unrefreshing sleep
- Extreme exhaustion lasting more than 24 hours after physical or
If you feel that you have persistent excessive fatigue, you
should consult your doctor.
Editor's note: This post is appearing simultaneously today