Chronic fatigue syndrome.
For more than two decades, those three words have consumed Liz Burlingame because, well, words mean something.
They convey feelings and connote action. They can comfort or cause pain. They can be our best friend or our worst enemy, failing us completely.
That’s how Burlingame feels every time she tries to explain this thing that sent her back to her parents’ home in her 20s, unable to work, and barely able to get out of bed.
“The words are all wrong,” she said during a bedside interview at her home in Dunwoody recently.
Not only do they fail to describe the utter exhaustion she lives with, Burlingame, 49, believes those three little words could one day cost her her life.
Not many people, including doctors, have ever heard of CFS. No one can say for sure what causes it. And there is no consensus on how to even treat it.
Hold on to that, but here’s the real clincher: Although it affects an estimated 1 million Americans and 17 million globally, people like Burlingame who have the condition are often dismissed as suffering from psychosomatic disorders.
“The name invites insult,” she said. “No researcher wants to study it. No doctor wants to treat it, and despite the disabling, life-altering effects of the disease, no patient wants to admit they’ve got it.”
At first, Burlingame believed she just had a bad case of the flu. When her symptoms were worse two weeks later, she saw a doctor who diagnosed her with an upper respiratory infection and prescribed an antibiotic.
That was in April 1991.
“The antibiotics knocked out the infection, but I never felt better,” she said. “The only thing I could do was go to work, come home and go to bed.”
Over the next year, Burlingame, who during that time spent her days working at the Chattahoochee Outdoor Center and nights studying filmmaking at Georgia State University, would consult seven different doctors.
She was 24 when an infectious disease specialist diagnosed her with chronic fatigue syndrome, also known these days as myalgic encephalomyelitis or ME/CFS.
Before then, Burlingame lived independently. If she wasn’t working, she was hiking or camping somewhere in Colorado, Montana, or Northern California.
Even though the words were all wrong, CFS meant she had a name to call what she was experiencing — an unremitting sense of exhaustion, debilitating headaches, extreme hypersensitivity to light and noise, loss of muscle control, insomnia, cognitive impairment, a kind of mental fogginess.
“It never once felt like fatigue,” she said. “It felt like I was sick. It was a profound tiredness, unrelieved by rest and sleep. There was no paralysis, but I would call it paralyzing exhaustion. There were days when my legs wouldn’t hold me up, when I couldn’t use my arms, and that’s true today.”
Burlingame has been sick now for 26 years. She feels lonely and isolated. But when she goes online, she’s hardly alone because there are people, nearly 70,000 here in Georgia, who have been sick just like her for decades.
And for the first time since her diagnosis, there are signs of hope. Not only are there efforts to increase awareness about ME/CFS, use of the term ME/CFS has also spiked, offering a more accurate description of the illness. Instead of some trivial complaint, people know it as the disease that it really is.
And then there’s “Unrest,” the recently released documentary by Jennifer Brea that demonstrates through her own story and those of other ME/CFS sufferers just how debilitating the disease is and the toll it can take on patients and their families.
The Centers for Disease Control and Prevention will host a continuing education event featuring the film at 6:30 p.m. Nov. 30 at the Savannah College of Art and Design’s SCADshow Theater in Atlanta. Admission is free for physicians, nurses, pharmacists, veterinarians, public health professionals and others.
Organizers say the event, which is being billed as “America’s Hidden Health Crisis: What Clinicians and Others Need to Know About ME/CFS,” is key to raising awareness and mobilizing the medical, scientific and public health communities around the illness.
Burlingame believes we’re still in the dark ages when it comes to ME/CFS, but with the help of dedicated advocates like Brea and films like “Unrest” and last year’s “Forgotten Plague,” ME/CFS might just emerge from the long, tired shadow cast by CFS.
“As patients, we want to be understood, to be treated with dignity, to think less about the ways modern medicine got it wrong and to find the ways today to get it right,” she said.
When we’re sick, isn’t that what we all want? Don’t ME/CFS patients deserve at least that much?
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