Twenty-two years ago, patient advocate Tom Hennessey chose May 12 to be International ME/CFS and FM Awareness Day. May 12 had been Florence Nightingale's birthday, and since it she may have had ME/CFS or something like it, the date of her birth seemed like a good choice.
ME/CFS stands for myalgic encephalomyelitis/ chronic fatigue syndrome.
I have been writing about ME/CFS for five years now, and each year for our May 12 International ME/CFS and FM Awareness Day, it is the same.
Usually when I'm doing research to prepare for writing an article, one of the things I'll do is a Google search on my topic.
I did my search, and found plenty of exposure for FM (fibromyalgia). At least, compared to what I found for ME/CFS it seems like lots. And that is a good thing for FM, since not too long ago it was considered a non-condition that nobody ever heard anything reputable about.
But while there are tons of blogs, forums and support groups for ME/CFS, it is rare to find an article by any well-known health websites, or journalistic websites.
This year, there were none that uttered even a whisper about our Awareness Day. Lots of other Awareness Days out there are getting press but we just don't seem to show up outside our own ME/CFS ghetto.
Because of this dearth of exposure and awareness for ME/CFS, and because I happen to have it myself, I will be focusing here only on ME/CFS.
Thank you, EmpowHER, for being a website that has published something each year about ME/CFS on International ME/CFS and FM Awareness Day, when few outside of our patient/advocate community have done so.
Here are a few of the things going on in the ME/CFS arena around the world for May 12.
Dr. Charles Shepherd, a leading ME/CFS expert in the UK will have given three talks this weekend, in Limerick City, in Galway City and at the Dublin Airport
On May 12, in Aomori, Japan, the ME/CFS movie "Voices from the Shadows" will be screened.
There's a vigil for ME/CFS you can take part in, even if you are stuck at home in your bed or on your couch. The website is from the UK but the vigil is around the world. Last year people in 14 countries took part.
If you want to participate, it's simple. Light a candle and spend some time in solitude for ME/CFS. Or you can light a virtual candle here.
The vigil may be done as a solitary event but spreading the word about it to others will help this movement and awareness of ME/CFS grow from one year to the next.
For the May 12th Light Up the Night event, participants around the world are asked to cast some light on ME/CFS, FM, and MCS (multiple chemical sensitivity).
In Canada, for instance, the CN Tower, Calgary's Langevin Bridge, Charlottetown's City Hall, Hamilton's Farmer's Market, Niagara Falls, Ottawa's City Hall Heritage Building are some of the public places that will be lighting up the night with blue, purple or green lights. Blue is the official color for ME/CFS.
Citizens are encouraged to turn on their outside lights as well. The more lights, the better.
You can find more information on this here.
ME/CFS Australia (Victoria) has some suggestions for raising awareness.
At work if it's allowed, you might ask to put up a poster with information about ME/CFS, or take in a stack of brochures or flyers to put on a desk.
They also recommend holding a High Tea as a fund raiser.
Send a letter to a local library, school, or community center letting them know it's Awareness Week or Day. Perhaps send something along with it that they can post -- ready to go to make it as simple as possible, and therefore more likely to get posted.
If your doctor is approachable, send him a letter, plus a fact sheet and other information.
The ME/CFS Australia (Victoria) website also offers fact sheets and brochures you can download and print out.
Retweet, Share ... in other words, pass on in any and every way possible the items you'll see on social media for ME/CFS awareness. Let's paper the Internet.
For some of the suggestions mentioned here, it may be too late for this year. But as sure as day follows night, ME/CFS Awareness Day will be taking place next year on May 12th.
Remember us when it does. And remember us the whole year through.
Voices from the Shadows. Voicesfromtheshadowsfilm.co.uk. Retrieved May 11, 2014.
Irish ME/CFS Association: MC/CFS Awareness Month Activities. Irishmecfs.org. Retrieved May 11, 2014.
A Vigil: International ME Awareness Day. Vigilformeawareness.org.uk. Retrieved May 11, 2014.
Chronic Fatigue Syndrome: Did You Know May 12th is Our Day? EmpowHER.com. Retrieved May 11, 2014.
Chronic Fatigue Syndrome: International ME/CFS and FM Awareness Day is May 12th. EmpowHER.com. Retrieved May 11, 2014.
The Faces of Chronic Fatigue Syndrome: Phoenix Rising YouTube Video. EmpowHER.com. Retrieved May 11, 2014.
Visit Jody's website at http://www.ncubator.ca
Reviewed May 12, 2014
by Michele Blacksberg RN