Invisible But Still Very Real: Chronic Fatigue Syndrome

For me, one of the worst feelings is waking up after 8 hours of sleep and still being exhausted. There can be many reasons why we are unable to recharge from time to time, but for many Americans that feeling of exhaustion can be caused by Chronic Fatigue Syndrome (CFS). The CDC estimates that at least one million Americans have CFS.

The exhaustion associated with CFS can interfere greatly with work and personal lives. In the United States, the estimated annual economic impact of CFS is $9.1 billion dollars in lost productivity. This dollar amount does not even include costs associated with medical treatment or disability payments.

A major barrier to treatment for people with CFS is the stigma associated with the disease. For years, people have assumed CFS was not a real illness but simply symptoms manifested from another condition, like hypochondria or depression. People with CFS and other poorly understood "invisible illnesses" (illnesses with symptoms that cannot be seen) have the added challenge that employers and family members may not believe they are truly sick because from the outside they look fine.

To this day, advocates have fought to legitimize CFS, which has included working to change the name of the disease. They argue that the name is imprecise because fatigue is not the only symptom of the disease, and they believe it affects a patients’ ability to get the care they need.

Despite extensive research in search of a cause or diagnostic marker for CFS, much is still unknown. Studies, like one published by the CDC in 2006, have now identified biological abnormalities in people with CFS. However, scientists don't yet understand how these changes contribute to the symptoms.

As I mentioned, a major challenge of invisible illnesses like CFS is that there are no outward signs of the illness. It is often challenging for a person with CFS to get the proper diagnosis for the symptoms. It is important that we remember that the problem they have, while hard to see, is very real. We should be careful our words reflect this fact. Comments, such as "I'm sure it's all in your head," suggest the disease is not a legitimate problem, when in actuality it can be debilitating. Make an effort to watch out for phrases like these when talking to people we know have invisible illnesses.


Check out this fact sheet to see why Investment in research saves lives and money for those effected by chronic fatigue syndrome.