Garnet news article by Maureen Hanson, 19 October 2016: The real story about Chronic Fatigue Syndrome: a devastating illness that needs a better name
Chronic Fatigue Syndrome is an illness that many may have heard of, but few, in reality, know much about.
The effect of the name
The misconception of the seriousness of the disease is in part caused by the use of the name Chronic Fatigue Syndrome (CFS), coined in 1988 by a committee convened at the Centers for Disease Control. Prior to that recommendation, the disease was known by the more intimidating name Myalgic Encephalomyelitis (ME), which is favored by many patients and still used in many countries overseas. Chronic Fatigue Syndrome trivializes the nature of the disease and its impact on the lives of the people who suffer with it.
For individuals severely ill with ME/CFS, merely arising from bed to take a shower, or leaving the house to go to a medical appointment, can cause them to be bedridden several days afterward. Some people cannot manage to get out of bed at all.
The name influences not only the public’s conception of the disease but also that of medical professionals. As a point, in fact, College students and medical trainees who were given identical scenarios were more likely to consider patients described as having myalgic encephalopathy as having a biomedical illness, while patients labeled as having chronic fatigue syndrome were more likely to be thought to be psychiatric cases.
Four times as many women as men fall ill with ME/CFS. Many doctors dismiss women’s descriptions of ME/CFS symptoms as depression or emotional disturbance.
A new name
Recognizing the effect of naming the disease Chronic Fatigue Syndrome on patients and doctors an Institute of Medicine study recommended changing the name Systemic Exertion Intolerance Disease. The name refers to a primary symptom of the illness, post-exertional malaise, which is an increase in symptoms when a victim attempts to do some previously tolerable exertion. Most patients reach a steady-state level of exertion that they know from experience that they can bear, and exceed it only when absolutely necessary, as they know the consequence will be a subsequent increase in pain, malaise, fatigue, and cognitive difficulties that will last days or weeks.
The images of the disease
But even a name change, which to be truthful, has not really caught on, won’t solve the problem when the imagery associated with the disease continues to be benign and misleading. As we all know, images are powerful and associating the wrong ones with the disease only helps to spread misinformation.
An exception is currently on an display in Times Square in New York: a video broadcast by the SolveME/CFS Initiative, a patient advocacy organization, which shows photos of genuine, severely ill Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients.
The SolveMe/CFS Initiative
New Research Encounters Same Bias
These images are quite a contrast to many that accompanied the multitude of news reports about the recent scientific publication about abnormalities in the gut microbiome in ME/CFS. In June, a team of researchers which I was a part of, reported our discovery that the populations of bacteria in the gut of individuals with the disease are abnormal compared to healthy individuals. Increased escape of bacteria from the gut into the bloodstream appears to trigger inflammation in some ME/CFS victims.
This new information was the topic of more than 70 articles in the lay and medical press.
All the attention on our work had a chance to educate people about the actual life-robbing nature of the disease.
But the photos chosen to illustrate many of these articles spread persistent misconceptions about the disease.
There were several categories of photographs used to illustrate the news reports about our gut microbiome findings: microscopic images of bacteria, anatomical drawings with intestines highlighted, and photographs of people thought to be experiencing ME/CFS.
But many of the photos of patients with the disease were completely inappropriate, resulting from the misunderstanding that fatigue is not only the primary, but also the only symptom of the disease.
Indeed, one article was entitled: “Gut bacteria can make you tired.”
Fatigue is a common effect of other diseases as well, including multiple sclerosis and cancer. But no one would illustrate an article about either of those diseases with someone sleeping at her computer, a woman snoozing with coffee cup in hand, or a woman who has evidently just come home from work, gazing wearily at children’s toys scattered around the floor. Another photo shows a woman lying on a couch with light from a nearby window streaming onto her face. ME/CFS victims are unlikely to be in such a pose, given that most are quite sensitive to light and some must confine themselves to dark bedrooms.
When the underlying cause of the disorder is finally understood, undoubtedly a new and more accurate name will arise. In the meantime, it’s important for editors at news outlets and health news bloggers to not only cover the disease accurately but to select images that represent the true nature of the disease that is described by the Institute of Medicine as “a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.”
Maureen Hanson is Professor of Molecular Biology and Genetics at Cornell University and conducts NIH-supported research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. She is a Public Voices Fellow of The OpEd Project.
