Thursday, 20 December 2012

What’s in a name? ME vs CFS

And so with all things: names were vital and important.” - Algernon H Blackwood

There is much debate about the names ME (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) and the other labels our symptoms are given.  There is much debate about what ME should be called and why it has come to be known as CFS and I would refer you to What Is ME? What Is CFS? for a comprehensive account of the issues and history behind the controversy.

My objection to CFS is simply that it makes a mockery of a very serious illness.  Examples that have been used many times by others include how you would not even think of referring to Alzheimer’s  as ‘Forgetting Disease’ or to Parkinson’s as ‘Shaking Disease’, yet somehow we get labelled with Chronic Fatigue Syndrome as if we’re just tired.  Furthermore, if the extent of our illness is not understood, then how are we ever going to receive the appropriate help and support from medical practitioners and the authorities? 

I received a letter from my lovely aunt in New York.  She told me to stay positive and that I would get better, “Just look at Cher, she was so ill, now she’s performing daily in Vegas”.  I can’t even remember if I attempted to explain to her that I do not have whatever Cher had.   Dr John H Greensmith makes a similar point when he writes, ME is not the same as CFS.

I do believe that it is important and necessary to make the distinction between ME and CFS, however, when I write about it I shall be using the moniker ME/CFS for convenience and because it seems to be the most widely accepted compromise.

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