by Jody Smith
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
It is a lesser known fact that Florence Nightingale was bedridden for her last half century thanks to an unidentified chronic illness. Florence would have understood us.
We still don’t get the world’s mainstream press on our day. But here again, we’re making inroads. And there are more of us standing on our shaky legs in more parts of the world.
Why are we intent on papering the internet and telling our stories, showing our faces and photographing our empty shoes? It’s not because we look so darned good we just have to share. It’s because we want things to CHANGE.
We want change on the global level — better treatments, medications, therapies, from medical staff who don’t misconstrue our circumstances, belittle or dismiss us, or wreck our days in a myriad of ways healthy people can’t begin to imagine.
It’s gotten harder to write these articles for International ME/CFS and FM Awareness Day in the last few years, but I guess that’s for a good reason. Early on when things were in their infancy and there were just a few events and organizations that I knew of, I wrote about them to the best of my ability.
Each year, though, there has been more going on with more groups and individuals participating. This year I highly doubt that I will hit them all, and consequently ask anyone who isn’t in this article, or who knows of something I’ve omitted, to please do a writeup in our Comments section.
Doesn’t it seem like we’ve been doing this forever? It does to me. But don’t be tempted to give up or tell yourself that all our efforts are wasted. No sir. Increased awareness and change has been slow, there’s no doubt about it. But it is coming. In recent years we’ve been seeing some encouraging breakthroughs. Here are just a few examples:
Documentary filmmaker and activist Jennifer Brea’s movie “Unrest” has been reaching new audiences for ME/CFS. Journalist Ryan Prior’s documentary “Forgotten Plague” is focused on ME/CFS. So has the documentary “What About ME?” which was co-written and directed by Susan Douglas of Double D Productions.
Journalist Julie Rehymeyer’s book “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand” recounts her journey. Author Valerie Free has published a book called “Lighting Up a Hidden World: CFS and ME” which shines additional light on this illness.
These are just a few of the projects which are bringing us new attention from many who were never aware of us before. Or if they’d heard about our illness they had no idea just how bad it is.
Some of the new audience will also be people who may wield some influence, or who will be at the bedside of someone with ME/CFS.
Some may be tempted into launching new research, or will handle their patients differently, with more compassion and better therapies. They will be less likely to hurt us with words of dismissal or misinformation, or disastrous treatments.
We’ve got more researchers who are intent on learning about this disease, easing symptoms, and finding cures.
Our online patient community has grown substantially just in the nine years that I have been personally back on the net. As we all know, ME/CFS doesn’t discriminate and hits any and every strata. One of the ironic side benefits of an undiscriminating disease that can hit anybody is that our community contains people of all stripes, experience and abilities.
Want to have a better grasp on what is happening to you? Wishing you could find ways of getting through your day with more spoons still intact? Someone in our ME/CFS community may just have some of the answers and are eager to share.
We’ve got people with scientific and medical backgrounds who can explain things to those whose ME/CFS brains get totally fuzzed out by this stuff. We’ve got teachers, with or without official certification, who are ready to share knowledge, and to offer suggestions of ways to handle symptoms more effectively.
We have nurturers who are bent on encouraging those who are discouraged, perplexed and scared in their day-to-day struggles. And it doesn’t hurt that we have people with backgrounds in media and politics. Some of these folks are putting the microphone closer to the faint voices of our invalids, aiming that amplification in the directions where it will do the most good. They know who to contact and how to package our messages.
In May of 2016, a global day of protest called #MillionsMissing was organized by the campaign platform #MEAction to be held in Washington D.C. By September, protests and rallies were held in 14 countries around the world, focused in 25 cities.
On May 12, 2017, demonstrations were held in 18 cities in seven countries, demanding increased funding of research and clinical trials as well as greater public awareness and medical education. In 2018, over 100 cities around the globe are participating in #MillionsMissing.
#MillionsMissing says this:
“ME (commonly known as “Chronic Fatigue Syndrome”) is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work. ME affects 15 to 30 million around the world, yet this disease remains invisible and people are missing from their own lives.”
Since so many of our numbers are not healthy enough to stand up for long, let alone demonstrate or hold a sign, a plan was devised that was more practical for us, and which also had its own unique trademark. Patients and caregivers were invited to set out their empty shoes and take pictures which were then posted online using the hashtag #millionsmissing and all other social media.
The sight of these silent scenarios is poignant and gut wrenching. It’s a little ghostly. All those millions missing. What a waste of human lives, of people who could be important contributors to our society. If only they could.
They’re not at work, not in school, not doing volunteer work or research. They’re not taking care of their partners and families. Millions of dollars go missing when they should be funding research and clinical education. Millions of medical practitioners have no idea how to help us, or even how to talk to us.
Sick people who dare to advocate for themselves and their community are taking some serious risks. We of the ME/CFS community all know the reason for this, but for the sake of other readers, I will explain.
One of the hallmarks of ME/CFS is often described as a crash. A person with ME/CFS who has pushed themselves too far for too long can experience a severe relapse that can last anywhere from a couple of days to weeks, months or even years.
We all know this can happen under enough duress, and trust me, organizing or participating in a demonstration, enduring any travel necessary, standing or even sitting (possibly lying down?) on the scene of a rally can use up every spoon and all future spoons for an unknown period of time.
Make no mistake, it takes a lot of courage for every one of these wounded heroes to take part. And it speaks of the importance of these events, that they are willing to suffer potentially shattering consequences to do so.
Being unable to leave their homes or possibly their beds hasn’t stopped some people with ME/CFS from posting their own stories, often with photos, on various social media. There are hundreds of these stories streaming through newsfeeds, giving voice — and faces — to the suffering.
Light Up the Night
In honor of our International ME/CFS Awareness Day, landmarks all over the world will be lit up for us. I know of a few of them, I’d love for people to tell us of more of them in our Comments section.
For instance, Brisbane, Australia will light up its Story Bridge, the Victoria Bridge and City Hall.
Also in Australia, Fremantle’s Round House cliffs, Victoria Hall and the Moores Building will light up with blue lights. At noon on Saturday, May 12, at Fremantle’s Pioneer Park, more than a hundred empty shoes will be on display.
In Germany patient organizations and initiatives in Hanover, Berlin, Gütersloh and in Bielefeld are organizing campaigns for global protest of the #MillionsMissing.
In the U.K., the City of York Council will light up for us.
Want to know more?
May 12th International Awareness Day
#MEACTION FOR SUPPORT FOR RESEARCH FOR A CURE
International ME/CFS and FM Awareness Day Is On May 12, 2018
May 12th International ME CFS FM Awareness Day Australia
Millions Missing Holland
MillionsMissing London 2018
Associated New Zealand ME Society (ANZMES)
The ME CFS Foundation South Africa
Detroit Me/cfs DAY 2018
On Saturday ‘millions’ of ‘missing’ people will reappear for the day
This illness is sucking the life out of millions of people – how to spot it and why it happens
News segment on ME/CFS, from “Today Tonight” (Adelaide, South Australia), May 3rd 2018