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: What’s in a Name? IOM Report Suggests Name Change for Chronic Fatigue Syndrome

What’s in a Name? IOM Report Suggests Name Change for Chronic Fatigue Syndrome

Managing Editor

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 health information.

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 cognitive exertion."   

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 homes.

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 wrong.

Just Tired or Something Larger?

According to Mayo Clinic, chronic fatigue syndrome has the following official signs and symptoms:

  • Fatigue
  • 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 redness
  • Headache of a new type, pattern or severity
  • Unrefreshing sleep
  • Extreme exhaustion lasting more than 24 hours after physical or mental exercise

If you feel that you have persistent excessive fatigue, you should consult your doctor.

Editor's note: This post is appearing simultaneously today on HealthComU.

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The Healthy(ist) blog is a platform to share, learn about, and debate topics related to public and social health, scientific research, health communications, and behavior change.
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