Blog: Jamison Writes: "How to Properly Name a Disease"

[Andy]

A few weeks ago I was preparing for a conversation on the Armchair Expert podcast with Dax Shepard, and I found myself getting in a debate. Not with Dax, but with my friend who was helping me prepare talking points for the podcast.

While compiling the stats and other data we planned to mention on the podcast, we got in a debate about what to actually call our illness when talking to an audience who had probably never heard of it.

https://jamisonwrites.com/2018/12/10/name-calling/

 

[Mij]

"Another concern I had was that our spot on the podcast would be very short — five minutes"

Sometimes it takes me that long to say the name depending on how tired I am

 

[DokaGirl]

If the misleading term cfs is dropped from the community's vocabulary, perhaps it will disappear, just as some in authority have tried to eliminate the concept of ME as a distinct, debilitating disease.

 

[Seven]

I struggle with the same, I believe ME describe my disease (I do feel the inflammation on the spine and brain) so I don't care who says we don't, I feel it. But I am afraid plp will not understand ME name only.

 

[ScottTriGuy]

f the misleading term cfs is dropped from the community's vocabulary, perhaps it will disappear, just as some in authority have tried to eliminate the concept of ME as a distinct, debilitating disease.

I concur.

Outside the UK, the term ME is effectively non-existent to the general public.

It is much easier to brand an unknown term, ME, than it is to try to re-brand 'chronic fatigue syndrome'.

The less we use the cfs term, the sooner it will fade into history. Getting our researchers to change their language would help too.

 

[DokaGirl]

Thank you @ScottTriGuy. I think one reason we haven't switched off cfs, is that community members are worried that people won't know what we're talking about. Ironically, those outside the community don't know what cfs means anyways. They just think they know what it means: lazy, delusional, malingering, benefit scrounging, burnt out, overly busy, while some of us think we are conveying the name of an illness, something they will understand as a physical illness.

We aren't doing ourselves any favours. In my small sampling of how these things go, when I've said I have Myalgic Encephalomyelitis people seem interested etc. If I then "explain" that ME is also called CFS, they say "Oh", in that disinterested, tone of voice that tells me they think they know what I'm talking about. In these scenarios, what I haven't done is what I set out to do, which is explain ME to them. Well, that can take volumes, but there are some short cuts.

The sooner we get rid of the term cfs, the better. By using it to try and explain what the term ME means, we are denigrating the term ME, and the disease. As many have said, it's like calling lung cancer chronic coughing disease. Pair up lung cancer with chronic coughing disease: lung cancer/chronic coughing disease, and it too may not seem as serious.

 

[Barry]

Calling it chronic fatigue syndrome is like calling Parkinson’s disease chronic shaking disorder or lung cancer chronic coughing syndrome. It’s not a fair representation of the illness, especially when so many people judge the severity of an illness by its name.

Yep.