Chronic fatigue syndrome activists launch 'uprising' from their beds

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.

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.

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.