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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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What do you call your illness?

Discussion in 'General ME/CFS Discussion' started by acouchy, Apr 10, 2016.

  1. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    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.
     
    Last edited: Apr 10, 2016
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  2. skipskip30

    skipskip30 Senior Member

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

    TigerLilea Senior Member

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    I agree with SilverbladeTE. You couldn't print what I call it some days. :D 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.
     
  5. Aurator

    Aurator Senior Member

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    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.
     
  6. rosie26

    rosie26 Senior Member

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    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.
     
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  7. SB_1108

    SB_1108 Senior Member

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    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. :bang-head:

    Next time I may just pretend I'm healthy.
     
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  8. Justin30

    Justin30 Senior Member

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    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...
     
  9. taniaaust1

    taniaaust1

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

    hellytheelephant Senior Member

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    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....:bang-head:
     
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  11. ukxmrv

    ukxmrv Senior Member

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    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.
     
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  12. msf

    msf Senior Member

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    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.
     
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  13. msf

    msf Senior Member

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

    ScottTriGuy Stop the harm. Start the research and treatment.

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    ME.

    'chronic fatigue syndrome' feels like an accusation, not a diagnosis.
     
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  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I call it:

    image.jpeg

    That pretty much sums it up.
     
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  16. OhShoot

    OhShoot

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    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. :rofl: 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. ;)
     
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  17. ahimsa

    ahimsa Sick since 1990

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    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.
     
  18. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    :thumbsup: 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.
     
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  19. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    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.
     
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  20. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    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.
     
    Last edited: Apr 11, 2016
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