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01 May 2012 @ 03:27 am
Can We ReName CFIDS Already? My Proposal For Our New Name.  
Blogging Against Disablism Day, May 1st 2012

In the USA, the offical name for my disability is CFS, Chronic Fatigue Syndrome. Everyone even tangentially connected to this illness knows the name is ludicrous. This name has done us vast material harm in layperson comprehension, medical acknowledgment, research interest, research funding, and patient care -- all because the name sounds like "Hey man, I'm tired." People hear the name and think we're not really SICK. I promise you, we are. We are sick as a dog. I can't tell you how many people over the years have said to me, "I'm tired too!" So, patients (myself included) and advocates often use the acronym CFIDS, for Chronic Fatigue Immune Dysfunction Syndrome. We don't know whether immune dysfunction is the heart of our illness (it's one of many theories), yet many of us prefer this possible red herring that sounds slightly more medical over the "Hey man I'm tired" label.

We don't know medically what the core physiological problem is. What causes CFIDS? What are its biological mechanisms? Don't we deserve the research to figure that out and some respect in the meantime? CFIDS could even possibly turn out to be more than one illness. Yet we desperately need a better name, even before understanding it medically. I propose keeping the official acronym and changing the name to Chronic Flu Syndrome. It doesn't claim to know any more than we know, and it's a dense nugget of description of what our lives are like.
Maija HaavistoDiamonDie on May 1st, 2012 08:58 am (UTC)
Since many decades we've already had a good name: myalgic encephalomyelitis (of course, you can argue whether CFS and ME are the same, but ICD-10 treats them as synonyms and "CFS" diagnosed with the more stringent criteria is the same as ME). I don't think there is any need to invent new names. Well, the proposed neuroimmune endocrine dysfunction syndrome (or something like that) is nicely descriptive, but still. The neuromyasthenia derivatives weren't bad, either.

I have to say I don't like the chronic flu syndrome at all. I have chronic fever and for me it is one of the most important symptoms, but many people have no flu-like symptoms. Like CFIDS it also discounts the most important aspect of the illness: the neurological dysfunction. (It could also make people think CFS/ME is caused by the influenza virus.)
Rebecca Rabinowitzdiceytillerman on May 1st, 2012 09:01 am (UTC)
The USA utterly refuses to use ME. I have no idea why; I'd be perfectly happy with ME.
deborah.dreamwidth.org on May 1st, 2012 04:08 pm (UTC)
my UK cousin with ME using that name and England is perfectly happy with it, and I don't understand why we won't use it in the USA. It makes perfect sense, and solves all of the (perceptual) problems you list above.
(no subject) - shehasathree on May 1st, 2012 09:47 am (UTC) (Expand)
deborah.dreamwidth.org on May 1st, 2012 04:10 pm (UTC)
I have to admit that -- while I have no concept of what CFS/ME brain fog is like, except as it has been explained to me by people who experience it -- I am always surprised by how much my chronic physical condition causes cognitive dysfunction, simply because living with chronic pain and the need to adapt constantly uses so many cognitive resources.
(Anonymous) on May 7th, 2012 12:41 am (UTC)
Flu really doesn't cover a lot of the symptoms. But anything that did would win the Guiness world record for longest name! No real suggestions, anyone know the reason why we can't use ME? I have been saying Chronic Fatigue but even the people closest to me don't understand the severity. We need something short and not sweet, with an effect like CANCER, but no name will get the serious reaction unless there is the research behind it, we are caught in a catch 22.
Ruth MadisonRuthMadison82 on May 1st, 2012 01:08 pm (UTC)
Hmmm, I'm in the U.S. and I've never heard "ME." I wonder why that is. I'll try to use that instead of CFS in the future.