May 12, 2021: International ME/CFS and Fibromyalgia Awareness Day
Remembering the Legacy of Awareness Day Founder Tom Hennessy, Jr.
Thomas Hennessy, Jr.
by Jody Smith
I have written a few articles about May 12 over the years and usually I focus on the events and groups involved in this special ME/CFS date. I’ve always thought that it’s important that we tell our stories but this year, I’ve been struck by the importance of recording and passing down these stories.
So much can be lost if we don’t. As the years go by, past events, past heroes can vanish in the shadows. And let’s face it, we with ME/CFS have already lost far too much to shadow.
When it comes to May 12, there are many groups and individuals and events that have been, and continue to be, significant. But there is one name, to my...
Risk Factors for Suicide in People with Myalgic Encephalomyelitis A Conversation with Professor Leonard Jason and Madeline Johnson
Dr. Leonard A. Jason runs the Center for Community Research at DePaul University in Chicago. Image by Center for Community Research at DePaul University.
Dr. Leonard A. Jason is a professor of psychology and Director of the Center for Community Research at DePaul University in Chicago, USA. He has a long history of research in the field of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). His most recent books include: The Psychology of Peace Promotion and Introduction to Community Psychology: Becoming an Agent of...
Meet the Researcher: Interview with Dr. Erin Cvejic
Dr. Erin Cvejic is a Senior Lecturer in Biostatistics at the School of Public Health, University of Sydney, Australia, and an Adjunct Lecturer in Psychiatry at UNSW Sydney.
Over the last eight years he has written several articles on the issue of sleep and cognitive function in people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).
I had an opportunity to interview Dr. Cvejic for Phoenix Rising.
How did you get involved in the field of ME/CFS research?
Dr. Erin Cvejic:
I completed my Ph.D. in the field of experimental psychology, but was eager to pursue a program of research that had greater potential for real-world impact that could eventually help people.
A post-doctoral position became available at the University of New South Wales (UNSW) to work with Associate Professor Uté...
We want to celebrate the memory of PatJ here on Phoenix Rising. Many of our members knew him as a long-time friend on these forums. We received some sorrowful news about Pat on December 29, 2020 from his sister Shannon.
“I wanted to inform you that my brother Patrick Johnson of Whitehorse, Yukon, Canada ended his suffering this morning. His wishes were to let this group know,” she told us. “I would like to thank you all for the friendship and support that you have provided to him for the duration of his illness. He was a kind and gentle soul and he was a light in our lives.”
Pat was also a steadfast light for his friends on Phoenix Rising. He was always ready with a kind word to lift the flagging...
I have a bad history with late November and the month of December, ever since I first got ME/CFS 28 years ago. Some of that has to do with the shorter daylight hours in my hemisphere, but a lot of it is wrapped up with the encroaching Holiday Season.
December plays host to a multitude of holidays, holy days and celebrations. Many of these are filled to the brim with excitement and anticipation. Fabulous! However, there is a flip side to all that excitement and anticipation. A mountain of work and planning and running around is usually necessary to pull off the Big Day, no matter which one it is.
I write about Christmas because that's the one I'm familiar with. I've had a lot of Christmas seasons over my lifetime -- more than six decades of them. I don't remember the first few, and the next few are pretty hazy. But by the end of the first decade I...
I'm Canadian, so I hear a lot of good-natured jokes about how Canadians apologize all the time. It's funny in part because ... in part, it's true. But you know who else apologizes a lot? Chronically ill people. And that ain't so funny.
Now some of us were probably like that before becoming ill. But what's particularly interesting and maybe a bit disturbing, is how many of us have gone from being confident, even strident, self-assured people unapologetically filling our space to ... sorry for requiring someone's attention, sorry for having needs, for taking up too much room, too much time ... too much air ...
Do you know what I mean? Do you know some chronically ill who do this? I did it. Maybe you did it too. If not, you probably know someone who have been shrunk this way by their unending illness.
I had been a busy, opinionated woman before I got sick. My...
August 8th, 2020: Understanding and Remembrance Day for Severe ME
By Jody Smith
Every year we who are able do our bit to bring greater awareness to the plight of the most severely ill 25% in the ME/CFS community. Does this bring greater awareness to anyone outside of our community? I wish I knew. But we carry on in this endeavour because these precious people matter to us and we want them to matter to the rest of the world too.
August 8th is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis. It's a day that is intended to bring attention to those who are most invisible in our ME/CFS community. It is a time when we remember and honour those who have passed away without cure or respite, and those who continue to live in the dark and silence.
It would only make sense that those of us who are not so ill are the faces you...
May 12, 2020: It's Our International ME/CFS and FM Awareness Day
by Jody Smith
On May 12, our International ME/CFS and FM Awareness Day, I tend to look back over the years since I was first flattened by ME/CFS. Things changed for the better for me when I found my community. I'd already lived with ME/CFS for 17 years by then. It was a lonely and frightening time. And then I stumbled upon Phoenix Rising with its articles and its forums.
No longer alone. I can't describe what that meant to me. That is something I, and all the members of Phoenix Rising, want for everyone who deals with ME/CFS as a sick person and/or caregiver. We really want everyone to recuperate fully and forever. But in the meantime, we take full aim at nobody being alone in their illness.
I have been self-isolating for over two weeks now. Not because of COVID-19. At least, not at first. Like many of you, I spend a great deal of time in my house because of ME/CFS. I was housebound due to a resurgence of ME/CFS symptoms since the beginning of March. And like many of you, I have hated being forced to stay at home and away from the outside world for extended periods of time. In my case, this has been going on for years.
Facing great uncertainty
Now, though there is an odd benefit to this experience of having been sidelined for such long stretches. Unlike many normally healthy people being faced with self-isolating, I know how to do this. I know that it is frustrating and limiting but oh yes! I know that it can be done.
I think with sympathy about those whose finances are in jeopardy, who aren't sure...
Hey, it's the beginning of a new year. And 2020 has a nice fresh ring to it. This time of year are you thinking about the future? I'm not talking about New Year Resolutions. I ditched those years ago.
Me, I have a hard time looking to the future. When it comes to scheduling and planning and organizing, I can only deal with a couple of weeks at a time. But I am not one of those people who has a One Year Plan, a Five Year Plan ... and I can't even conceive of anything further ahead than that.
I envy those people who do this, quite frankly. But ... my brain can't handle it and I'm afraid to look forward. And besides that, any plans I might make are liable to be overturned against my will at a moment's notice.
Starting a day or two before any appointment or coffee date or family event, I begin hoping that I won't get up crippled or addled, and...
Living With ME/CFS in the Holiday Season: Year After Year
by Jody Smith
This year marks my twenty-eighth holiday season fractured by ME/CFS. Some years have been better, some worse. All of them have been thrown off kilter in one form or another for me and my family.
My first Christmas marred by ME/CFS was in 1992. My husband had had fibromyalgia for four years. That spring I'd had a bout of frightening symptoms which disappeared six week later as mysteriously as they had arrived.
We had five children between two years and 10 years of age. Life was frightening and unstable and unpredictable. We felt like we were hanging over a precipice and our ability to protect and care for our children was in jeopardy.
Our furnace had broken down. Repairing and fueling the thing was far beyond our means so my already-injured husband re-injured his ribs day in and day out as he chopped wood for our two wood...
On my side of the world, change is brewing. Here in North America, the cold and dark brooding of winter looms and glowers. In some areas it has already hit, hard. Temperatures dropping, days shortening ... for someone like me who lives with ME/CFS and seasonal affective disorder, this is a daunting time. I am staring down the disappearance of light.
Just to make things more interesting many parts of the continent, including my own, have recently plunged off the precipice of a change from Daylight Savings Time. At that point the gentle receding of daylight turns into a body slam. Not a couple of minutes' further loss each day but the hammer blow of night fall an hour earlier than we're prepared for.
Sounds kind of melodramatic, I suppose. But I tell you for me, it's a melodramatic time encroaching. And I know I'm not the only one.
The ME/CFS community is all too familiar with the realities of invisible disabilities. As a matter of fact we are rife with them. For this reason, we're happy to make some noise for Invisible Disabilities Week.
If you have an invisible disability, you're living with one or more physical, mental or neurological challenges that other people might not be aware of. Some people living with disabilities might still be quite functional. Or then again they may not. Many fall somewhere in between.
Some are able to work, but have no energy at the end of their work day. Others can only hold down a part-time job but manage to take care of their daily personal needs. And then others need help in their day-to-day lives. Many invisible disabilities alter life substantially.
According to the 1994-1995 Survey of Income and Program Participation...
There just aren't enough hours in the day for the person with ME/CFS. At least, it's been like this for me. It's not that I'm so terribly busy. Indeed, I am not. Not like I used to be busy, before illness.
The complicating factor and really, the only factor I have any control over, is the amount of what I'll call white space necessary to get through a day without falling on my face.
If I'm doing things right, I might be able to go visit my dad at his nursing home for half an hour in the morning, maybe even a few times in a week. I might even be able to spend half an hour doing some errands.
But then I'd better have a couple of hours with no demands after that. And it would be even better if I had nothing else going on till I make dinner. And best if the evening has no obligations at the end of such a "busy" day.
August 8th, 2019: Understanding and Remembrance Day for Severe ME
by Jody Smith
We in the ME/CFS community mark August 8th, 2019, on our calendars and in our hearts. On Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis, we seek to increase awareness about what our most severely ill endure. And we remember and honour those who have passed away without cure or respite, and those who continue to live in dark and silent solitude.
Our first Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis was August 8th, 2013, launched by the 25% M.E. Group. The concept for this day originated with Diane, whose daughter Lili was severely ill with ME/CFS. Diane tells Lili's story here.
The date August 8th was chosen by the 25% M.E. Group because it was Sophia Mirza's birthday.
Do You Have to Travel Far for ME/CFS Medical Visits?
by Jody Smith
One of the things that can strike fear into the heart of a person with ME/CFS is the prospect of going to the doctor. Worse yet is the ordeal of having to travel a long distance for such an appointment. An hour or two traveling is bad enough but sometimes it’s necessary to be on the move for days, particularly if a specialist is involved.
Even a few minutes in the back seat of a car, lying down with eyes closed, can be crash-inducing for those who are severely ill -- that is, the people who need medical help the most.
Ironic, isn't it?
Consider having two people accompany the patient for the journey, if at all possible. That way the person with ME/CFS is surrounded by...
The Crash that Follows the Push of ME/CFS and FM Awareness Day
by Jody Smith
It's been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill people and the people who care about us make bigger ripples in bigger ponds for ME/CFS awareness.
People have used up their last brain cells and spent their allotment of energy for this day and for the whole month of May. Of course, there's a price to be paid.
There has been a deep calm — or at least, a lack of action — here in my house, and I think in the homes of many members of our ME/CFS community. I attribute this to the push/crash that so often surrounds our May 12 International ME/CFS and FM...
May 12, 2019 Is International ME/CFS and FM Awareness Day
by Jody Smith
International ME/CFS and FM Awareness Day 2019 has grown from an idea conceived by Thomas Hennessy, Jr. back in 1992. He chose the date of May 12 because it was the birthday of army nurse and Red Cross founder Florence Nightingale, who lived with an unidentified chronic illness for the last 50 years of her life.
This year marks 27 years since our Day's inception. That was also the year that I first became ill with ME/CFS. As of May 12, 2009, I had only been healthy enough to be back online for a matter of weeks. I had never heard of our Day. But I gradually got caught up.
I started writing about International ME/CFS and FM Awareness Day a couple of years later. And back then it was easier to do so in a way. Not that there was a lot of information online about it at least not that I could find. But something started to...
Why Is it so Hard to Learn New Things With ME/CFS?
by Jody Smith
On good days, I mostly operate on cruise control, with the occasional moment of brilliance and quite a bit of vegetative regeneration. I can handle most things especially if they are routine and familiar. Bring in something new, though, or something I haven't dealt with for awhile and it's a whole new ball game. One I don't tend to win.
I used to be pretty smart, and a darned good multi-tasker. Just sayin'. I could give homeschooling advice on the phone while sorting out two or three squabbling kids, writing notes to myself and making lunch, and still have brain-space to spare. That all changed with ME/CFS.
I know that everyone runs into snags when they're learning something new, or revisiting something they used to do. The accompanying challenges that I deal...