You’ve probably heard of chronic fatigue syndrome or myalgic encephalomyelitis (ME/CFS) – the debilitating disease that can leave its sufferers too weak to pick up a toothbrush.
What you may not know is that ME/CFS is a very poorly understood illness, and sufferers such as myself often find that the most challenging aspect of this illness is battling people’s misconceptions of us.
In order to clear the air, here’s a few things you might not know about ME/CFS:
25% of patients are severely affected.
Taking a shower is like climbing Mt Everest.
Having ME/CFS is a full time job.
It needs a name change.
Although I’m using the terms chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) interchangeably, chronic fatigue syndrome is far more commonly heard in Australia than the correct medical name. Myalgic encephalomyelitis means “inflammation of the brain and spinal cord”, and is a much more accurate description of what is happening to the bodies it affects than the vague descriptor 'chronic fatigue syndrome'.
Unfortunately, 'chronic fatigue syndrome' belies the true nature of the illness, and invites mockery. 'Fatigue' is what healthy people feel after a long day at work, an intense session at the gym, or a night without sleep. It has nothing to do with being unable to sit upright or lift a spoon to your mouth, being carried to the bathroom or being unable to utter a single word. This is the devastating experience of many severe ME sufferers.
There is no known cure.
It can be deadly.
Why you need to live like you're dead on The Well.