Wednesday, 3 December 2014

What is M.E? Confusion with terminology

This is a post that I have been putting off writing because although I have had M.E. for 7 years, I still feel unquantified to explain what it is.  I have decided to do a series of posts explaining M.E. all with the label "What is M.E?", you can find my labels on the right of the screen mid way down (excluding mobiles I'm afraid).  I have also added my post Spoonie? to this list.

The most commonly used name is Myalgic Encephalomyelitis:
Myalgic means muscle aches or pains
Encephalomyelitis means inflammation of the brain and spinal cord

However the name Myalgic Encephalopathy is also used:
Encephalopathy means a condition that affects brain function.

Although Myalgic Encephalomyelitis is more commonly used and is the name that I have used on this blog, I actually prefer the term Myalgic Encephalopathy, as I think that it describes my condition better.  A lot of people now consider this to be the more accurate name, I should probably start using it!

The term CFS is also used meaning Chronic Fatigue Syndrome:
Some people considerer CFS and M.E. to be the same thing, whereas others think that they are mutually exclusive.  The problem is that the term Chronic Fatigue Syndrome implies that only tiredness is a symptom, whereas the condition M.E. has a long list of symptoms.  (I will write more about these in a future post.)  I have only referred to myself as having M.E., because it is the name that I personally identify with.  However I have used the term CFS at times when describing the illness more generally, because I know that some people understand it better.

I couldn't write this post without referring to the funniest thing I have seen regarding the terminology of this illness.  A few years ago, on M.E. awareness day, as usual many of my M.E. friends were posting about the condition on social media.  One friend posted "today is ME awareness day" as his facbook status.  He got lots of comments from people who obviously weren't aware of his condition, saying things like "yes were all perfectly aware of you" and "what's all this self promotion?"  It lead to some quite awkward follow up comments!

Have you had any awkward incidences regarding medical terms?

Image source unknown


  1. That's so funny that people misread that Facebook status, Jenny. I agree that Myalgic Encephalopathy seems a better description. It's no wonder people have such a hard time understanding the condition when even the name is goes by is so confusing!

    1. Hehe thanks Faye! To be honest with you I hadn't really realised there was a difference between the two terms until recently, and if I didn't notice after 7 years, it must be even more difficult for non-sufferers to notice! :)

  2. I have Fibromyalgia so it's quite different but I can relate a little bit to what you're saying as so many people don't understand Fibro at all or have never heard of it. The most frustrating thing I find is when people try to say they have Fibro when they clearly don't, I don't mean that in a horrible way but I think it gets thrown around too much and people self diagnose themselves when they're actually just tired and it makes them undermine how much of an awful illness it actually is if that makes sense. I had a situation at work recently where I just wanted to cry because people were treating it like a hypochondriacs illness and it really isn't :(
    Really pleased to have found your blog and I look forward to more posts in this series :)
    Love Holly x


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