Today is ME/CFS Awareness Day. Why May 12th? It is the birthday of Florence Nightingale, who became bedridden with an illness resembling ME/CFS after the Crimean War. From 1860 to her death in 1910, Nightingale continued to work for the causes she believed in despite her illness and disability.
ME/CFS Awareness Day began 20 years ago, spearheaded by Tom Hennessy of RESCIND. Today, you will see blue ribbons on Facebook and Twitter avatars, and patients are making efforts to get this day into the public eye. The spring meeting of the CFSAC usually coincides with Awareness Day, making it possible for patients to combine meeting attendance with visits to Congress but that did not happen this year. But for the first time I am aware of, the CFSAC is marking the occasion with a statement from Dr. Nancy Lee.
I have a few ideas for how we can mark this day.
- If you are a CFS patient, be aware that you are not alone. Take a moment to connect in some way, even just in your thoughts, to the world community of people with ME/CFS.
- If you know a CFS patient, be aware that our illness and suffering is invisible to most people. Take a moment to reach out and tell him/her that you care.
- No matter who you are, be aware that not enough people are aware. Take a moment to tell someone, ANYONE, about CFS and the devastation it causes.
Great resources that tell the story of CFS:
A Sudden Illness by Laura Hillenbrand – quite simply the best article about having CFS that I have ever read
The Long, Tangled Tale of CFS by David Tuller
The Puzzle of Chronic Fatigue Syndrome by Amy Dockser-Marcus