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May 12, 2011 is International ME/CFS and FM Awareness Day. ME stands for myalgic encephalomyelitis. CFS stands for Chronic Fatigue Syndrome. FM is the short form for fibromyalgia.
It has been almost two decades since Tom Hennessey established our International Awareness Day in 1992. He picked that particular date to honor the birthday of Florence Nightingale.
Nightingale, after service and dedication above and beyond the call of duty, was taken down by a condition suspiciously like ME/CFS, spending the last 50 years of her life with this chronic and debilitating illness.
Even though people with ME/CFS have been trying to raise public awareness for almost 20 years, we haven't made much of a dent. Very few people have even heard of this day that is so symbolic for us. It seems to us in our darkest hours that not many more people are aware of the extremity of this illness than there were a score of years ago.
But we persevere. We write articles. We blog. We lobby, write letters and emails.
You'll find us on YouTube, in videos. On Facebook. Many of us are too ill to lead a normal life amongst average citizens, but increasingly we use the internet and pool what resources we have.
A small number of researchers, scientists and doctors have gathered around us, determined to ease the suffering of ME/CFS if they can. A handful of journalists have taken our faces and our stories and published them to bring us out of the shadows and out of the CFS ghettos, at least for the few moments it takes to read their words.
Online support groups are the lifeline for many of the chronically ill who virtually have no life other than the virtual world on the internet. These groups are where we get our emotional support, much of our medical information, advice and encouragement from others who are also ill.
This is where we go to shoot the breeze. To vent after a bad day. To share a funny story. To get the only response some of us are going to get anywhere.
These interactions are a treasure that helps reassure us that we exist and that we matter to someone. For many of us, this is the only place any reassurance will come from.
ME/CFS energy is small energy. Small, brief and intermittent, like a flickering candle.
Impossible for many of us to know from one moment to the next whether the ability to write, or speak, or think complete thoughts, will last through our small bursts of communication. And impossible to predict whether, once that burst is spent, another one will ever come again.
The internet thankfully has a way of amplifying and connecting tiny sparks and flickers of ME/CFS energy, from one laptop to another around the globe.
We get our words across to each other. And we are hoping eventually to get our message out to the rest of the world in a way that will spur the world on to care about finding a cure for ME/CFS, and relieve the suffering.
Remember May 12, and International ME/CFS and FM Awareness Day. Remember us.
Resources:
Fibromyalgia and Chronic Fatigue Syndrome Awareness Day
http://chronicfatigue.about.com/b/2010/05/12/fibromyalgia-chronic-fatigue-syndrome-awareness-day.htm
An Interview With International Awareness Day Founder and Leader of RESCIND, Tom Hennessy
http://phoenix-cfs.org/old_site/InterviewHennesseyCFS.htm
National ME/FM Action Network: Clinicians and Researchers Are Invited to the 10th International ME/CFS Clinical and Research Conference
http://www.msnbc.msn.com/id/42613141
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
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