Living with M.E.

A must read. This is a reblog of a sort of “reblog.” You’ll understand when you read this “beautiful piece of writing.” It is a description of what living with M.E. is really like by this courageous, creative woman.

Mast Cells & Collagen Behaving Badly

A few months ago one of my friends shared a link on Facebook to a post written by a friend of hers who’s had severe M.E. for 14 years now.  It’s a beautiful piece of writing and explains what living with M.E. is like far better than I ever could.  I have the permission of the author to reproduce it here.

This description of M.E. screams at the injustice of calling this disease “Chronic Fatigue Syndrome”.  Not once in this piece does Sarah mention feeling tired.  What we have isn’t “fatigue”.  It’s a complete collapse of every bodily system until just mearly breathing feels beyond us.

This piece also demonstrates why the diagnostic criteria for M.E. needs to be tightened, so that people with M.E. don’t get lumped together with those suffering from “chronic fatigue”.   I have chronic fatigue as part of my Ehlers-Danlos – it’s nothing like how I…

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