Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients …
Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients angry, frustrated and disgruntled. They remain invisible, misunderstood and very sick.
Any possible advance in the science of the disease has been squashed by the gross lack of funding by NIH for this severe disabling disease. In addition, the lack of education of the disease in medical schools has insured the lack of care for patients nationwide.… Read More
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we’ve all been saddled with …
If there is one thing that is sure to get ME/CFS sufferers riled up, it is the name of our disease.
The very fact that two names are attached to each other, janus-like, almost as if mocking one another seems emblematic of all the controversy surrounding the illness.
If only we could just sort out the name, perhaps everything else would fall into place.
For how can anyone trust a condition with such a slippery, inconclusive title?
Dr. Derek Enlander suggested that we could re-name the illness ‘Ramsay’s disease’ in the grand tradition of calling diseases after the people who first documented them.… Read More
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way …
Ergonomics can help people to navigate in a healthy way through their world, so they are not slouching, bent funny or stuck in the same position for too long, and so they can avoid the aches, pains and problems that result from same.
Ergonomics and ME/CFS may seem like strange bedfellows. And in fact, actual ME/CFS bedfellows, those who must live all day long in their beds, may not find anything useful here.… Read More
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Dr. Jonathan Kerr is regarded as one of Britain’s foremost myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) researchers, and an expert in microbiology, inflammation and genetics.Formerly of St. George’s University of London, he is now working at the Escuela de Medicina y Ciencias de la Salud, Universidad del Rosario, Bogota, Colombia.
Dr. Kerr kindly agreed to be interviewed, with topics including his recent publication, which identified SNPs associated with ME/CFS, his prior research of the disease, diet and its role in health, disease definitions, and why he dropped off the ME/CFS scene for a little while.… Read More
New grandma Jody Smith shares her frustrations about not being able to visit the new baby…
My daughter and son-in-law just had a baby last week. We are thrilled. But we won’t be able to see the baby or hold her any time soon. We won’t be able to take over little gifts or help out with housework or babysitting.
The little family lives a province away and we can’t afford to make the trip. And that includes not being able to afford the energy it would require.
People automatically — and naturally — ask if we’re going to fly out to see them, and I must repeat to one then another that, no we won’t be able to go.… Read More
Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS …
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
It is not just a case of stigma. Yes, who wants to admit that they have ME/CFS? But then who wants to openly admit they have AIDS or hepatitis C, or that they wear a colostomy bag?
All illnesses are stigmatised: when you get ill people prefer to stay away.… Read More
Jody Smith has been taken by surprise by the value of having a dog when dealing with ME/CFS …
There’s been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They’ve been fairly indifferent to my presence and we’ve shared a live-and-let-live type of relationship over the years.
Then I got a dog.
I didn’t even want this dog in the beginning, to be honest. My son Duncan had adopted Cleo, a German Shepherd-Lab mix that had ended up at the Humane Society after an injury that required amputation of her back left leg.… Read More
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room …
I have two clocks in my living room. One clock is on the wall across from where I usually sit at my computer. The other is on the wall to my left. I guess this might be an unusual arrangement, not to be found in most homes, but it has been practical for me.
I have had long intense bouts of what I have called tendinitis over the years, affecting my neck, shoulders, arms, hands, legs and feet.… Read More
If you’re ever at Jody Smith‘s house, don’t bother asking anybody if they are hungry …
One of the most ridiculous questions you can ask in my house is “Are you hungry?”
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Or rather, we knew we should have eaten something about twenty minutes ago and saved ourselves this distress.
For me, this realization hit after I started eating low carb.… Read More
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS …
If you’re not a fan of hallucinatory drugs you’re gonna hate ME/CFS.
When I first became ill in March of 1992, the feeling of altered reality inside my head, the shaking which could not be seen in my arms and hands and which later spread to the rest of my body, the uncertainty with which I navigated, never quite sure I could physically accomplish a walk across the floor without falling or bumping into things … these things were bizarre and alarming.… Read More
After having lived for years with ME/CFS, Jody Smith learned there’s more to this beast of an illness than she realized, and that what might help one person may not help others …
When I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS.
I guess I thought that whatever it was that I had was what you had … what they had … what that person laying on their face over there had …
Turns out I couldn’t have been more wrong.
I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.… Read More
Jody Smith considers how things we consider beautiful can help feed a starving soul ...
I spent every day for years propped up on pillows on my bed. I could see out my window to the left. My messy closet was to the right. Looking straight ahead I saw a television, a messy desk and a dresser.
Then one year on a rare Christmas shopping expedition, my daughter Rachel the Chauffeur was with me in a department store, and as we neared a bunch of prints (pictures not fabric) I said in passing, “That’s nice.” I stood and looked for a moment at a scene of what felt like a French village.… Read More
It has been seven years since Jody Smith began seeing her Naturopath Doctor. Time then for a brief reflection on the extent to which a variety of interventions may have helped move Jody forwards in her own battle with ME/CFS…
February, this year, marks seven years since I began seeing my naturopath, Dr. Kelly Upcott. For six and a half years, I saw her every month, and if, for some reason, there was five or six weeks between appointments, I would begin to deteriorate rapidly. But all that changed last summer.
Circumstances prevented me from getting in for two months, and we were both pleased to find that there had been no setbacks.… Read More
Jody Smith considers how her life had become one of necessary isolation, and how a chance encounter with new neighbours and the possibility of having them in her home, led to feelings of fear and insecurity. Looking back she reflects on how these concerns have slowly improved and how the occasional visitor is now more welcome…
I live in a cul-de-sac that contains half a dozen houses. And, as I think about it, living on a cul-de-sac – or dead-end street – strikes my twisted sense of humour as being a great, though unintended, picture for living with ME/CFS.
Its after dark, and through my living room window, I see the headlights of any cars driving in or out.… Read More
By Jody Smith
Hope is essential – especially when things look darkest. And yet, when you’re living with ME/CFS, stirring up hope can be the hardest thing to do.
Hope can be a double-edged sword that can loosen your bonds, or savage you when you wield it. Having hope is no guarantee of success. Daring to hope can feel like you are setting yourself up for the possibility of more pain. And let’s face it, you are.
Fanning that wee flame takes the courage of a warrior. It takes a certain recklessness that can be in short supply when you feel surrounded by the darkness that is ME/CFS.… Read More
By Jody Smith
In North America, the end of November traditionally kicks off the holiday season which runs till the beginning of January. “Holiday season” may seem to be at best an ironic term, at worst a bad joke, for describing this most taxing of time periods, especially for people who are chronically ill, and often poor and isolated as so many are who have ME/CFS.
In the United States, Thanksgiving pulls the trigger for the holiday season. It’s an occasion that does its best to bring some light and comfort to a cold, bleak time of year. At least, in theory.… Read More
Jody Smith reflects on how vital she has found the slow return of her writing ability – how it has helped with the expression of feelings and experiences, contributed to reestablishing a sense of self, and has proved such an important and productive means of social interaction…
Soliloquy – A dramatic or literary form of discourse in which a character talks to himself or herself or reveals his or her thoughts without addressing a listener.
In my life before ME/CFS, I did a lot of writing. I kept a journal most of my life, and in the years before becoming ill, I was also writing for newsletters for my church and my homeschooling group.… Read More
Jody Smith relates how tiny victories helped her regain a life despite her limitations.
What is it about situations that are unfamiliar that make our brains feel lumpy and our bodies feel like they are moving (or trying to) in another dimension?
When I was at my sickest with ME/CFS, this wasn’t much of a problem, because I was spending most of my time hugging my bed, trying not to fall off the world. When I got a bit healthier, the unfamiliar began to present a new kind of problem, needing new strategies to be worked out for daily survival.
For instance, when I was once again able to dress myself and venture outside of my house, stepping out of the front door was just the first of a series of overwhelming challenges.… Read More
Jody Smith explains how autumn sends her body into hibernation mode, and it’s time to slow down – or else.
I read recently that the term “autumn” is predominantly used in the U.K. “Fall” is more commonly used in the U.S. I’m Canadian, though, so I guess I can use either one. And I choose “autumn” simply because it causes less confusion. It always means the season.
Added to that, “fall” can also mean what happens to me in the autumn. Everything drops for me as summer wanes.
Even though this has been the case for about two decades, this fall or crash catches me off guard every autumn.
… Read More