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.
I had hoped to be able to reference articles and information from medical and news sources about the ME/CFS end of International ME/CFS and FM Awareness Day. This was not to be.
So instead, I will simply share my experience. The fact that I am writing this is evidence that I am one of the lucky ones. I am able to work. I am able to speak up to a larger circle than the people in my home.
Many of our sick are not so fortunate. Many of them don't have any small circle even at home. They are alone. Except for the ones who are able to be online, and have been able to connect with the ME/CFS community there.
That is the sole source of comfort, encouragement, advice and support. Were it not for support groups, forums, Facebook and the like, many of our sick would be entirely isolated.
We have all been hoping for a long time that an online presence, putting our all-too-human face to the illness, will catch someone's attention. Over the past few years, this has been the push, particularly for special occasions like International ME/CFS and FM Awareness Day.
Each year we hope the breakthrough will come. That the country, the world of healthy individuals and health care professionals will be jolted into awareness of our presence and our plight. And each year, tiny increases have come in the form of a few brave and conscientious journalists, doctors, scientists and researchers. But we need so much more.
So many other illnesses have benefactors and champions who get their conditions into the public eye. But not ME/CFS. It is as if we have scrawled our names onto the agenda and had it overlooked or erased by the powers that be.
We are beyond exhausted. Most of us have short windows of time on our good days when we are able to be active, or at least functional. Many of us do not even have those tiny windows.
We need help from those outside these walls of ME/CFS.
We are all over the country, though you can't see us, and can't hear us. We are behind closed doors, in many cases. The "lucky" ones may be out working (often only able to work part time) but all their energy is swallowed up by work, and they have no social lives, indeed no life outside of their work. There are more of us than you know and we are sicker than you can begin to imagine.
So if you have never before been aware of our predicament, please think about what you've read here. And please don't forget us, as we continue to seek help from the outside world.
Chronic Fatigue Syndrome: International ME/CFS and FM Awareness Day is May 12th. Empowher.com. Retrieved May 6, 2013.
Chronic Fatigue Syndrome: A Salute To 10 Kinds of Heroes. Empowher.com. Retrieved May 6, 2013.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Six years ago, I found treatment that worked for me, and now I am making a comeback.