This Documentary Shows The True Misery Of Chronic Fatigue Syndrome

This Documentary Shows The True Misery Of Chronic Fatigue Syndrome

unrest.film/Jennifer Brea

We’re parents so we know tired. We know the bone-weary, brain-fogged, limb-heavy exhaustion  that descends when children are small, or sick, or sleepless. But the documentary Unrest, which was released in 2017, deals with a different kind of exhaustion: Chronic Fatigue Syndrome, or ME/CFS.

When we first see Jennifer Brea, a go-getter with degrees from Princeton and Harvard, she’s stuck on the floor. She fumbles with the camera, and struggles to get up. In the next shot, she and her husband, Omar, are on their way to the hospital. Omar Brea explains, “You have to be careful because if you say too little, they can’t help you, and if you say too much, they think you’re a kind of mental patient.”

This is life with ME or Mylagic Encephalomyelitis — commonly known as Chronic Fatigue Syndrome.

Through a backdrop of video clips of her childhood, Brea explains how she was always active. As she and her husband tell the story of how they met and play shots from their wedding, it’s clear they are deeply in love.

Brea got sick one day with a fever of 104.7, and she never recovered. “I would go to the kitchen to get a glass of water and then I wouldn’t be able to move again,” she explains. Doctors chalked it up to dehydration, to stress over exams. She saw numerous specialists. A neurologist told her she had conversion disorder, a mental illness caused by past trauma she might not even remember. Her exhaustion, her inability to do anything but go from class to bed, from class to bed, was “all in her head,” he explained.

This is typical, Brea explains later, of CFS patients. No one believes them. A clip shows Larry King calling it “the yuppie flu.” A news report says that some people believe CFS is made up. Comedians ridicule it. Meanwhile, Brea is so sick that her husband needs to hold a cup of water for her drink.

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When she was finally diagnosed, the doctors couldn’t tell her if she will ever get better. “I had no idea if it would be months or years or decades,” Brea says. “It was as if I had died and was forced to watch as the world moved on … It’s like I don’t exist or never existed.”

She talks about suicide. This is, she later reveals, the most common cause of death among CFS patients.

But even in bed, she finds life. She begins talking to and filming, via computer, other CFS patients. One woman, for instance, has been bedridden for years. She spent two years in a semi-coma,  and severe osteoporosis set in. “I have the bones of a 100 year old woman,” she says.

For those who aren’t familiar with the illness (and many of us aren’t), Nancy Klimas, a clinical immunologist, explains CFS in this way: “There is something very wrong with these patients on a cellular level. Their cells can’t get the energy they need, and so they’re exhausted all the time. It seems to be triggered by a virus of some kind, and patients develop an immune deficiency.”

Antivirals help Jennifer Brea. So do other treatments, including avoiding mold. At one point, she goes so far as to try to live in a tent in her backyard and ingest hookworms.

Much of the movie focuses on Brea’s relationship with her husband, Omar. She fears that with her condition, she’s holding him back from his potential, and she can’t be a good wife to him — he’s stuck caring for the sick. The world is passing them by; they are “stuck in an amber of sickness.”

But he loves her through all of it. He goes with all the extreme attempts at cures, including the intentional hookworm infection, only losing his temper when she tells him to change his clothes for the second time in a hour because they may be moldy and contaminate her tent. But, he says, as long as he can talk to her and hold her tight, it’s enough for him. In some ways, this is as much a love story as it is a story about sickness.

Other CFS patients are not so lucky. One woman’s husband leaves her because he thinks she’s making the disease up. He thinks that if he goes away, she’d be forced to get better.

As if the disease weren’t bad enough, the lack of resources, knowledge, and funding makes it even worse. Because so many people believe CFS doesn’t exist, it’s underfunded. It’s under-researched. 30 years in, there’s no cure and little understanding of the disease. Dr. Klimas and Jennifer Brea both believe part of this is because 85% of CFS sufferers are women. 75% of them are unable to work. Of those, 25% are bedridden. Still, doctors tell them it’s all in their heads.

“Sickness and death doesn’t terrify me,” Brea says. Instead, it scares her that you can disappear because people are telling the wrong story about you. And that’s what’s happening.

In the end, Brea says that while she wishes she would wake up well, CFS has made her grateful for every single inch of her life. “I am still here. I am still here,” she says. Because in the end, this is a movie about survival: about the will to live, to love, to keep going while the world moves on without you. CFS patients hold a protest in which they show the public they exist, their disease is real, and has real consequences.

17 million people worldwide, 1 million in the US, suffer with ME/CFS. It’s real. It’s devastating. But even in the darkness, one can find moments of grace. And it’s this grace that Jennifer Brea manages to find in Unrest. 

If you are suffering from ME/CFS, you can contact the #MEAction Living with ME Support Group here. To learn more about the disease, visit this essay in the Journal of Internal Medicine.