http://well.blogs.nytimes.com/2015/0...d=8150816&_r=0


Chronic Fatigue Syndrome Gets a New Name

By Karen Barrow February 10, 2015 11:01 am

The Institute of Medicine on Tuesday proposed a new name and new diagnostic criteria for the condition that many still call chronic fatigue syndrome.

An institute panel recommended that the illness be renamed “systemic exertion intolerance disease.” The term reflects what patients, clinicians and researchers all agree is a core symptom: a sustained depletion of energy following minimal activity, called post-exertional malaise.

The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” said Dr. Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins who treats children with the condition.

There's more at the link. I do agree that the post-exertional malaise is probably the most frustrating symptom of this illness to me, but I can't help but wonder how many people, aside from people with the illness, will understand what it means.

I do give them brownie points for trying to come up with a better name for this illness.

[jelly-bean]

I think we would be better off if the original names were left alone. I have two diseases that are trying to change to different names now and I am always having to use both names so that the doctors can get what I have through one name or the other.

[juniper1959]

I agree that the changes can be confusing, but there are some cases where the names are so confusing they are worth changing.

Take Borderline Personality Disorder. Sounds like it's just a "borderline" problem, not very serious. Yet, quite the opposite, it is one of the hardest personality disorders to treat and live with.

Another pet peeve of mine is the newly named "non-Celiac gluten sensitivity." Seriously? Naming a disease by what it is not?? I myself have either Celiac or non-Celiac and I'm not sure I want to be tested in case I am a "non" and then nobody takes my illness seriously. Celiac is taken very seriously, but I have not found any understanding or sympathy from medical people or the public about its cousin, non-Celiac. The name sounds like it's unreal or something all in your head.

You've got to wonder who comes up with these names!