May 12, 2013 is International ME/CFS and FM Awareness Day. ME is the acronym for myalgic encephalomyelitis. CFS stands for chronic fatigue syndrome. FM is the short form for fibromyalgia.
In researching online for this article, I was disappointed by what I found ... or didn't find. I shouldn't have been surprised, I guess, after all this time. Nevertheless I keep hoping things will change as time goes on, and as advocates concerning ME/CFS continue to attempt to raise awareness of this debilitating condition.
I found plenty of personal blogs, Facebook pages, as well as ME/CFS forums and support groups that are doing their bit to raise awareness. But there has been nothing so far in 2013 in the way of newspaper articles online about International ME/CFS and FM Awareness Day -- not about ME/CFS, at any rate.
No medical websites spoke of this day set apart for this insidious illness. No national news reports about it. Not for ME/CFS. Again. Still.
It has been a little over 20 years since Tom Hennessey established our International Awareness Day in 1992. He picked the birthday of Florence Nightingale because she had spent the last 50 years of her life with a chronic and debilitating illness suspiciously like ME/CFS.
I find myself thinking that perhaps there will be articles appearing online as we get closer to the day. But past years' experience keeps this thought from becoming an actual hope. Certainly it is nowhere near an expectation.
Despite the two decades of striving for greater awareness, it seems we are still just a grassroots movement. The ME/CFS ghetto crying out in its beds, pleading for attention, asking for even a modicum of courtesy concerning our lamentable and terrifying condition.
What will it take for true recognition, for a shred of interest from the rest of the world, or even from this nation?
One of the problems with this scenario is that ... well, we are all sick. The dribbles of energy most of us experience is just not enough apparently to stir a ripple, create a blip on the outside world's radar.