What do you call your illness?

[acouchy]

Awareness day is approaching fast and I have decided that I really want to design an awareness product. I am curious as to what most people call their illness. ME? CFS? or ME/CFS? Also do you like it shortform with periods (eg. M.E.) or without (eg. ME). All input is much appreciated.
If anyone knows of a thread on this subject or poll anywhere please let me know. I feel like I have have seen this question posted before and/or a poll on it but for the life of me can not find it.

 

[skipskip30]

I tend to use CFS for text because ME can look like im saying me but I say ME when im talking. For added confusion ill sometimes use ME/CFS as well. I see them as interchangeable until we get a proper name for it one day.

 

[SilverbladeTE]

I call it "A right F.B. ! "
I'll let you figure out what the letters stand for

 

[TigerLilea]

I agree with SilverbladeTE. You couldn't print what I call it some days. Most of the time I refer to it as CFS as most people understand what that is. If I say ME to someone who doesn't have it they don't know what I am talking about.

 

[Aurator]

To people who show signs that they'll understand (i.e. the minority) I say I've got ME/CFS. To most casual inquirers I say I've got a primary immune deficiency (which is true, as I have no detectable IgA) and that I'm still recovering from the glandular fever that I had a few years ago (which is also true).

I think I got a greater aggregate of sympathy from friends, acquaintances and strangers for breaking my arm when I was seven (in fact I broke both arms 6 months apart) than I've had in the last four years of having ME/CFS.

 

[rosie26]

I always say I have ME and then I wait for the usual confused look on their face and then I have to reluctantly use CFS. I should really just say ME and if they don't understand I will explain that I have a neuroimmnue illness.

 

[SB_1108]

I went to the doctor the other day determined not to say the words CFS because some doctors aren't medically trained to understand the immune component and just like the general population, doctors equate CFS to depressed/lazy/etc.

So I said I said I have "a disease that affects the immune system." The doctor asked "what disease" and I said "myalgic encephalomyelitis." Then the doctor said "I've never heard of that before, let me google it" and that followed with "oh its chronic fatigue syndrome." I wasn't mentally prepared to provide an explanation of why I refer to it as ME. I'm sure she just thought I wanted a fancy name for laziness.

Next time I may just pretend I'm healthy.

 

[Justin30]

I rather use ME and then people say huh. Then I say I have a neuro immune disorder and a heart condition that I attribute to POTS.

Then if its someone I know I reluctantly say CFS......just seeing those abreviation makes me sick knowing that my immune system is not working and my nervous system causes endless anxiety.

I cant wait till they rename our illness or use ME then completely throw out CFS as a name...

 

[taniaaust1]

i use me. but unfortunately cant say the full name right then when always asked what that is

 

[hellytheelephant]

I use M.E- often people know someone else who has it- sadly it affects many people as we know.
I think the emphasis on fatigue in CFS leads people to assume it is just how they feel when they're really tired....

 

[ukxmrv]

I use ME because that is what I was diagnosed with and CFS wasn't invented at the time. I've used ME since then.

 

[msf]

Well, it starts with an M and ends with an R...

I call it ME because that´s what Dr Ramsay called it, and also because my father called it that too.

 

[msf]

Also, as KDM says, you might as well call cancer Chronic Fatigue Syndrome.

 

[ScottTriGuy]

ME.

'chronic fatigue syndrome' feels like an accusation, not a diagnosis.

 

[Hell...Hath...No...Fury..]

I call it:

That pretty much sums it up.

 

[OhShoot]

I usually use ME, I don't use CFS unless it's in conjunction with ME and at least a short explanation of why it's called that but isn't that.

I do have to use ME/CFS when talking to people on Lord of the Rings forums, because to them ME is short for Middle Earth. On forums in general I think I use ME/CFS. In emails with close friends I just use ME.

Occasionally if I think ME will be too much like the word "me" I will put periods to remind people. Then after I've used it a few times I assume they have it drilled into their brains now.

 

[ahimsa]

It all depends on the audience. With doctors there are too many different factors so I won't go into the various situations.

With the general public, I usually hand them a copy of the Key Facts document from the Feb. 2015 IOM report (see http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf).

But I usually don't even mention the name of the illness when I hand them the info. Partly it's because my brain fog gets in the way of trying to speak clearly. And partly it's so they don't jump to conclusions.

So, at least when it comes to written info, I use the name ME/CFS. Note that the Key Facts document does mention the SEID proposed name. It also mentions the need to change the name CFS because of incorrect assumptions. I think that information is useful for someone who knows nothing about the illness.

I thought I'd add a sample interaction. This happens to me at least every couple weeks.

========
Person in store, most often the cashier: "Hey, that's a cool gadget!" (pointing to my folding seat/cane)

Me: "Yeah, I need this due to my illness."

Person: "Oh yeah? What is it?"

Me, on a good day: "I have trouble standing, problems with my heart rate and blood pressure. Here's a flyer if you're interested."

Me, on an okay day: "It's complicated. Want a flyer?"

Me, on a bad day: "Uh... uh... Here's some info."
========

They usually take a flyer, either due to curiosity or to be polite. Who knows whether they actually read it. But I always keep a few in my purse. You never know.

 

[acouchy]

I call it "A right F.B. ! "
I'll let you figure out what the letters stand for

I agree with SilverbladeTE. You couldn't print what I call it some days. Most of the time I refer to it as CFS as most people understand what that is. If I say ME to someone who doesn't have it they don't know what I am talking about.

Totally understandable! Every morning I wake up and think F^&* that (last 18 years of my ill life) wasn't a bad dream. In my head I call this illness an effing nightmare.

 

[acouchy]

To people who show signs that they'll understand (i.e. the minority) I say I've got ME/CFS. To most casual inquirers I say I've got a primary immune deficiency (which is true, as I have no detectable IgA) and that I'm still recovering from the glandular fever that I had a few years ago (which is also true).

I think I got a greater aggregate of sympathy from friends, acquaintances and strangers for breaking my arm when I was seven (in fact I broke both arms 6 months apart) than I've had in the last four years of having ME/CFS.

It is sad that you get more sympathy for an acute short-term injury than you do for a chronic long-term one. Lives are destroyed by this illness and yet most of society has zero empathy. Life is pretty unbelievable at times.

 

[acouchy]

I went to the doctor the other day determined not to say the words CFS because some doctors aren't medically trained to understand the immune component and just like the general population, doctors equate CFS to depressed/lazy/etc.

So I said I said I have "a disease that affects the immune system." The doctor asked "what disease" and I said "myalgic encephalomyelitis." Then the doctor said "I've never heard of that before, let me google it" and that followed with "oh its chronic fatigue syndrome." I wasn't mentally prepared to provide an explanation of why I refer to it as ME. I'm sure she just thought I wanted a fancy name for laziness.

Next time I may just pretend I'm healthy.

Yup, Damned if you do... damned if you don't. I have the same problem. If I say ME I get a blank look. Gave my GP a printout of the ME International Consensus Criteria but I have no idea if he read it or not. Dread finding out. I usually just try to talk about whatever symptom is bothering me at the time and avoid saying ME or CFS. It is so sad not being able to speak openly about something so life changing and downright scary at times.