The Loneliness Of Having An Illness Science Doesn’t Understand



By Lily Carollo in Science of Us.


If someone told you she had something called chronic fatigue syndrome, you might not take her very seriously. Who among us isn’t tired all the time? And yet chronic fatigue is a condition with a name that belies the very serious malady it’s meant to convey. While exhaustion is indeed part of it, the worst symptoms are often debilitating: loss of motor functions for periods of time, feeling ill after even mild exercise, drops in blood pressure, and quickening heart rate. Although as many as 2.5 million Americans could be afflicted with the illness, there is no cure for CFS, and scientists still don’t understand its cause.

In her new book, Through the Shadowlands, science journalist Julie Rehmeyer chronicles her history with CFS, including her own attempts to find a probable cause and her mental and physical struggles with the condition. She also provides readers with a picture of the community of those afflicted with CFS, and some details on the most recent research being done to study the illness.

Recently, Science of Us spoke with Rehmeyer about her experience with the condition, including her thoughts on its name, the time she trained her pup to be her a service dog, and how she’s dealing with the illness today. What follows is a lightly edited and condensed version of our conversation.

Do you think CFS is a good name for your medical condition?
It’s a terrible name! Completely terrible name! It’s trivializing and it’s terribly degrading, because chronic fatigue syndrome sounds like “chronically fatigued,” right? You’re tired all the time. In fact, these two things are really different. You can be chronically fatigued without having chronic fatigue syndrome. Chronic fatigue is certainly a part of it, but it’s not the primary thing for many patients.

Myalgic encephalomyelitis is actually an older name for this illness. It’s a much better name in many ways, and it’s one that the patient community has been embracing more and more over time — at least in terms of the online community. I did not go all the way calling it myalgic encephalomyelitis because scientists, at this point, have mostly rejected that, because myalgic encephalomyelitis means muscle pain and inflammation of the brain and spinal cord, and there’s certainly not evidence that inflammation of the brain and spinal cord is the center of the illness. My feeling was, I don’t think we’re going to be able to solve this name in a long-term way, so I went with this quirky compromise in the book — [ME/CFS] — partly because it’s one that I can get my journalism editors to go along with.

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