May 12 is a big day in the ME/CFS world. For the last 24 years, it has been our International Awareness Day, shared with sufferers of fibromyalgia and other chronic illnesses over the years. ME/CFS stands for myalgic encephalomyelitis/ chronic fatigue syndrome.
For an awareness day that has shown up once a year for 24 years, International ME/CFS and Fibromyalgia Awareness Day hasn't developed the kind of traction we've been looking for. We take note of this every year. It makes us angry and discouraged.
But each year we who live with ME/CFS push on as if the whole world will hear it because, frankly, we think the whole world should hear it. And we think that people like us who live with this illness deserve better than to be ignored year in and year out.
Most of our exposure and promotion happens solely in the ME/CFS community, and most of those who hear and read about it are also part of the community.
You aren't likely to hear about our Awareness Day on a TV news show, or read about it in mainstream newspaper articles. But we are determined to be hopeful for that to change. And every small advance is noted and celebrated.
I was thrilled, for instance, to learn that Sacramento, California is recognizing ME/CFS at City Council today. A proclamation is being presented to Marilyn Yu, who is an ME/CFS patient, at the council meeting. The proclamation is sponsored by Council member Angelique Ashby.
Thank goodness for the blogs, websites, organizations and Facebook pages that are manned by one or more sick people who are trying to be heard. And thank goodness for EmpowHER for its willingness to provide a platform for us every year.
These sites and organizations manned by the sick and the people who love them, are the places where you'll find the real information. These people will tell you what it's really like to be severely ill with ME/CFS.
They are speaking up for their sick children or partners or parents. Or they have recuperated enough to retell horror stories of days when they were even sicker than they are now.
Why We Need May Awareness Day - Global Protest and More. MEadvocacy.org. Retrieved May 11, 2016.
May 12th is International ME/CFS, Lyme, and FM Awareness Day! Prohealth.com. Retrieved May 11, 2016.
CITY JOINS REGION IN RECOGNIZING TODAY AS MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE AWARENESS DAY. Retrieved May 11, 2016.
May12.org (U.S.) Awareness events. May12.org. Retrieved May 11, 2016.
May12th.org (Canadian organization) 2016 events document. Retrieved May 11, 2016.
May 12th - International ME/CFS & FM Awareness Day. Facebook.com. Retrieved May 11, 2016.
Further clues in the fight against Chronic Fatigue Syndrome. Eurekalert.org. Retrieved May 11, 2016.
Chronic Fatigue Syndrome Awareness Day. CDC.gov. Retrieved May 11, 2016.
Life With ME/CFS for 23 Years: Casting Light on Invisible Illness (2015). Empowher.com. Retrieved May 11, 2016.
International ME/CFS and FM Awareness Day: On May 12, Remember Us (2014). Empowher.com. Retrieved May 11, 2016.
Chronic Fatigue Syndrome: Did You Know May 12th is Our Day? (2013). Empowher.com. Retrieved May 11, 2016.