I was watching the movie Gone Girl the other night, my husband having gone skiing in Utah, leaving me with the kids and the snowstorms. I didn’t love the movie, but I thought it was a pretty harsh commentary on the fickleness of the media. In the movie, the husband is first painted as a monster, then as a hero, based not on his actual actions but on the way he presents himself to a lecherous talk show host. Like Ben Affleck, medicine has now decided that, in the absence of actual progress treating diseases, it will simply start portraying them differently, mostly by re-naming them.
The most recent disease to get a new coat of semantic paint is Chronic Fatigue Syndrome (CFS), a murky inflammatory disease that not everyone believes actually exists, but that about a million people say they have. CFS is characterized by what Dr. Peter Row at Johns Hopkins calls “the inability to tolerate both physical and cognitive exertion.” People who have it are constantly tired, have chronic aching pain in various locations, and often have disturbances of sleep, digestion, and mood. Some have called the disease myalgic encephalomyelitis, which sounds really medical-y and serious, but no one knows what that means and most people can’t even say it. The term CFS was coined by the CDC in 1988, and has since become a somewhat derogatory term used to imply that the sufferer, or anyone who has similar symptoms, is either lazy or crazy.
So, the Institute of Medicine has decided to re-name CFS. Now we’re supposed to call it Systemic Exertion Intolerance Disease. Isn’t that awesome? Catchy.
Seriously? Systemic Exertion Intolerance Disease is even worse than Chronic Fatigue Syndrome! Systemic Exertion Intolerance is what many of us feel immediately upon entering the gym, or sitting down to study for the maintenance of certification exam, or being asked to play hide-n-seek by our kids for the 12th time today. Now instead of people making jokes about how they have chronic fatigue, now they’ll make jokes about their systemic exertional intolerance. What’s the difference?
There’s been a lot of verbal gamesmanship going on in medicine. Remember when people were fat, or overweight? Now they’re Obese, and Obesity is a disease we are told. Some abnormal breast cells are now being called something that doesn’t have the word “cancer” in it because we doctors don’t know if the abnormal cells will ever become cancer. Type II diabetes has been re-named Insulin Resistance to distinguish it from Type I, in which no insulin is present at all. A “small” heart attack is now called a Non-ST Elevation Myocardial Infarction (STEMI), a term which I’m sure is very reassuring to patients.
The most hilarious part is that real CFS sufferers, to their credit, don’t like the new name. Here’s a quote from today’s New York Times article:(http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/?ref=health&_r=0)
Leonard A. Jason, a psychology professor at DePaul University in Chicago and an expert on the illness, predicted that patients would be reluctant to accept the new name. “The committee has come up with a name without vetting it,” Dr. Jason said. “And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.”
Well, of course they do. They want researchers to figure out what the #$%^@ is wrong with them and help them feel better. Re-naming the disease doesn’t make it any more or less real for the sufferer, nor does it go one inch toward solving the puzzle of what CFS actually is. Kind of a waste of time.