You’ve probably heard of chronic fatigue syndrome or myalgic encephalomyelitis (ME/CFS) – the debilitating disease that can leave its sufferers too weak to pick up a toothbrush.
What you may not know is that ME/CFS is a very poorly understood illness, and sufferers such as myself often find that the most challenging aspect of this illness is battling people’s misconceptions of us.
In order to clear the air, here’s a few things you might not know about ME/CFS:
25% of patients are severely affected.
Although mild cases seem to dominate the public consciousness, over a quarter of ME/CFS patients are severely affected, meaning they are house, wheelchair, or bed-bound. Some patients are stuck in bed for decades, their lives confined by the four walls of their bedroom. Others such as myself oscillate between the three, depending on the whims of the disease.
Author Siobhan Simper relies on a wheelchair to manage any distances further than a few paces. Image supplied.
Taking a shower is like climbing Mt Everest.
What’s the greatest physical challenge you can think of? Would it be running a marathon? Climbing Mt Everest? For me and other ME/CFS sufferers, the greatest challenge of our day is taking a shower. What might seem like a basic daily task to you is a massive undertaking for us. The physical effort of standing (or sitting on a shower chair), raising your arms to wash your hair, drying yourself off and getting dressed is so demanding that many patients only shower every few days, or not at all.
Having ME/CFS is a full time job.
Life with ME/CFS is so demanding that only a
small percentage of sufferers are able to work. As a former workaholic, sometimes it can be difficult to accept the fact that I am no longer able to engage in paid work or study. But I have to remind myself that being sick
is my job. I work harder, longer hours than anyone I know, with no pay. And just getting through another day with ME/CFS is a more challenging occupation than any other.
It needs a name change.
Although I’m using the terms chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) interchangeably, chronic fatigue syndrome is far more commonly heard in Australia than the correct medical name. Myalgic encephalomyelitis means “inflammation of the brain and spinal cord”, and is a much more accurate description of what is happening to the bodies it affects than the vague descriptor 'chronic fatigue syndrome'.
Unfortunately, 'chronic fatigue syndrome' belies the true nature of the illness, and invites mockery. 'Fatigue' is what healthy people feel after a long day at work, an intense session at the gym, or a night without sleep. It has nothing to do with being unable to sit upright or lift a spoon to your mouth, being carried to the bathroom or being unable to utter a single word. This is the devastating experience of many severe ME sufferers.
As author and ME/CFS advocate Laura Hillenbrand
said, “Fatigue is what we experience, but it is what a match is to an atomic bomb.”
ME/CFS sufferers don't always “present” as unwell, but the illness is always there. Image supplied.
There is no known cure.
Although there are many ways to manage ME/CFS, there is no cure. This is a particular problem for the severely affected, as management strategies such as pacing are often not enough to stay the course of their illness. Patients such as myself live in hope of research which proves a course of treatment.
It can be deadly.
Tragically, this disease has a death toll. The National CFIDS Foundation has a
memorial listing of all those we have lost to ME/CFS. One such victim was 19-year-old Australian Alison Hunter, who died after doctors tried to
brush off her 10 year struggle with the illness as largely psychological. Her parents established the
Alison Hunter Memorial Foundation on her behalf, in the hopes that no one need die as Alison did.
Why you need to live like you're dead on The Well.
We need your help.
Medical centres around the world are conducting ground-breaking research into the biological causes of ME/CFS. But they need your help. ME/CFS research is seriously underfunded - in fact, it receives
less research funding than hay fever. Research centres such as the (NCNED) in Queensland are always in need of donations so they can carry on their vital work. You can donate , and bring hope to the lives of ME/CFS patients.
Siobhan Simper is a psychology graduate living in country Victoria. She is now a full-time ME sufferer and blogs about disability and sewing at chronicallysiobhan.com.
Top Comments
Just to give a bit more detail to those who aren't familiar, at this stage research suggests that this is a hypometabolic disease (so a disease with a biological basis, NOT psychological) and it's looking like glycolysis in the cells is impaired - basically it means energy production is dysfunctional. Researchers are working on a theory that a protective switch got flipped on in response to a trauma such as glandular fever and never got turned back off. Please, if you have a few dollars to spare, please donate to The Open Medicince Foundation (OMF) End ME/CFS Project. Professor Ron Davis (who's son is severely ill with this disease) and his team are doing some ground breaking working that could potentially lead to a cure or viable drug treatments. I've had this illness for nearly 20 years and it is horrendous and so misunderstood.
Thank you Siobhan for sharing your ME story. My teenage daughter and I are also amongst the estimated 240,000 Australians who suffer from this devastating disease.