Jan 3 3:48 PM

Chronic fatigue syndrome activists launch 'uprising' from their beds

Jen Brea is among an estimated 1 million Americans with chronic fatigue syndrome. It's tough for Brea and her husband to plan for the future. There is no cure for CFS and little understanding about how the disease can unfold.
Jennifer Brea is among an estimated 1 million Americans with chronic fatigue syndrome. It's tough for Brea and her husband to plan for the future. There is no cure for CFS and little understanding about how the disease can unfold.
America Tonight

For Jennifer Brea, basic tasks like brushing her teeth and taking her medication are debilitating.

"I would describe it like being a broken battery, where every time you try to charge me, you know, I maybe fill to 5 percent," she said. "I think the thing that is really hard to understand about this illness is just how much it takes away from you and how so many of the basic things that make one feel like a human being just become impossible."

Brea is one of at least 1 million Americans with chronic fatigue syndrome, the vast majority of whom are women. It’s a devastating disease that still puzzles doctors, and only a fraction of sufferers are properly diagnosed. Once derided as “yuppie flu,” CFS actually cuts across all races and economic groups. But it still battles a heavy stigma, and research funding is scarce. Thirty years after its first discovery, there is no single diagnostic test and no treatment.

 “Every time I would go to my doctor, I would get a different explanation,” said Brea, wrapped in blankets on the sofa. “And you know, of course, they would assume it was something common, right? You know, I was 28…and healthy."

Three years ago, Brea was studying for a Ph.D. and traveling through Africa. Never imagining she would become devastatingly ill, she put off some substantial experiences, hoping to return someday with a soul mate to share those moments.

"I was in Tanzania, but I didn't climb Kilimanjaro, because I wanted to do that with someone that I loved,” she said, her eyes welling up with tears. She's not sure if she’ll ever have the chance again.

Too weak to speak her vows

Too exhausted to speak them herself, Brea listened and smiled as her soon-to-be sister-in-law read her wedding vows for her.
Too exhausted to speak them herself, Brea listened and smiled as her soon-to-be sister-in-law read her wedding vows for her.
Courtesy Jen Brea

When Omar Wasow first met his future wife, she was somebody who was in constant motion, he said, somebody who “took the world on with both hands.” "I saw her come in as a prospective student to graduate school,” he recalled, “and was totally smitten when I first saw her."

After more than a year of repeated illnesses, infections and doctors not knowing what she had, Brea was finally diagnosed with a severe form of myalgic encephalomyelitis, better known as CFS.

“This is a very different state for Jen now,” said Wasow.

After her diagnosis, Brea and Wasow’s had a picture perfect wedding: A beautiful day, a beautiful location and a beautiful bride. But Brea was so weak that she asked Wasow’s sister to read her wedding vows for her.

"The wedding was beautiful and wonderful and hard,” Brea said. “…I remember in the moment how I felt and how much physical discomfort I was in."

Brea now usually depends on a wheelchair when she leaves their home, and such trips are rare, and take meticulous planning.

"If doctors don't think it's very important, family members don't think it's important. The community doesn't think it's important. You'll have someone desperately ill. ‘I have chronic fatigue syndrome.’ ‘Oh honey, I’m tired too. Just, you know, take a nap, take a vacation,’ whatever."

Dr. Nancy Klimas

director, Institute for Neuro Immune Medicine

A disease with ‘a lousy name’

Myalgic encephalomyelitis is a complicated illness, said Dr. Nancy Klimas, director of the Institute for Neuro Immune Medicine, a premier research and treatment center for CFS in Miami. She believes it’s a post-infectious illness, when the immune system is unable to bounce a person back to health after an acute infection. Its primary symptoms are profound fatigue, pain and cognitive difficulties. And it affects women at two to four times the rate of men.

"It's been a very, very small budget,” Klimas said about funds devoted to discovering treatments. “I had looked up male pattern baldness … $18 million for male pattern baldness [but only] $3 million for chronic fatigue syndrome, an illness that affects 1 million people in this country that has at least 25 percent of them out of work and on disability."

Studies show that fewer than 20 percent of CFS patients in the United States have been properly diagnosed. Klimas said that's because many doctors tell patients their symptoms are psychological. The name itself is a problem, she explained.

"It's a lousy name,” she said. “It doesn't describe the illness very well at all. It's very pejorative."

The reluctance of some doctors to believe the origins of the symptoms are physical makes living with the illness that much harder.

"If doctors don't think it's very important, family members don't think it's important,” Klimas said. “The community doesn't think it's important. You'll have someone desperately ill. ‘I have chronic fatigue syndrome.’ ‘Oh honey, I’m tired too. Just, you know, take a nap, take a vacation,’ whatever."

An uprising from their beds

Jessica Taylor, 22, has bedridden for seven years. She says her room is like her entire world, but it's also a prison.
Jessica Taylor, 22, has bedridden for seven years. She says her room is her entire world, but it's also a prison.
America Tonight

Outside London, 22-year-old Jessica Taylor has been in bed for seven years – the first four in a hospital. Her symptoms first showed up when she was 14. She’s now so weak that she cannot even sit up by herself. She described the illness as “hell.”

“If I had to choose one word that would be it. It was terribly difficult because you're trying to get better. And no one is there to support you for that."

Jessica also suffers from severe osteoporosis. She said doctors told her she has the bones of a 100-year-old.

"I try to look at it in the most positive way possible,” Taylor said. “And so I describe my room as a world, because my bed is my house and all that type of thing. It could also easily be described as a prison because you can't get out and I can't normally even see outside my window."

Both Brea and Taylor use what little energy they do have to let people know about CFS. They call it an uprising from their beds.

Taylor launched Share a Star, a charity that helps children with terminal illnesses.

Brea is making a documentary about her illness to raise awareness and hopefully increase funding for medical research. 

On a rare trip away from home, Wasow drove Brea from Princeton to New York City to pitch her movie at a documentary competition, run by the Paley Center for Media.

"I thought if this is going to be my life for five years or forever, I need to make that matter,” she said. “I need to show the world this existence that I didn't even know was possible. With this film we are finally going give a true face to this disease."

The jury awarded her a special prize of $2,500*, which will help buy a more-sophisticated camera. But Brea paid a price for a day on the road.

"It took me two, three days to feel the same as I did that morning before I left," she said later.

But people clearly want to hear her story. Brea started a Kickstarter to raise funding too, and set a goal of $50,000. She ended up raising almost $213,000, from more than 2,500 backers.

Beyond the film, it’s hard for Brea and her husband to plan for the future. There is no cure for myalgic encephalomyelitis, and little understanding about how the disease can unfold.

"My husband and I got engaged in the first year of my illness, and we had no idea this was coming,” Brea said. “And it's hard to think about the plans that we had for our life: all the places we would travel, all the children we would have. And I just don't know what's going to happen to all of that."

 * Correction: An earlier version of this article listed a smaller award.

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