NJ Woman Felled by 'Devastating Disease Doctors Have Never Heard of'

PHOTO: Jennifer Brea is making a film about patients struggling with myalgic encephalomyelitis, known more commonly as chronic fatigue syndrome.
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Jennifer Brea kept getting slammed by recurring illness as she was working on her doctorate in political science at Harvard University. But the extent of her declining health didn't hit her until last year, when she went to a restaurant and said her brain was so foggy she couldn't even read the menu.

Today, at 31, she is on medical leave from Harvard, disabled by myalgic encephalomyelitis, or ME -- "the most prevalent and devastating disease your doctor has never heard of," she said. Her illness is better known as chronic fatigue syndrome in the United States, a name Brea said does a disservice to the severity of her symptoms.

"I can't drive. I can't leave my house unattended, and I'm in a wheelchair," said Brea, who lives with her husband in Princeton, N.J. "Even sitting in a wheelchair is taxing for me. It is pretty much impossible for me to do what I was doing before."

Before disease struck, she was training to be a professor and had led an active life. Before going to graduate school, she worked as a freelance journalist in China. Today, she said she is often bed-bound and plagued with "spells," which she said leave her nonverbal and unable to think.

Chronic fatigue patients no longer fakes.

"I got engaged in the summer of 2012, and for months, I was just trying to figure out how I would manage to show up at my own wedding," she said. "I got fevers and dizziness and couldn't leave the house without bumping into things or falling over."

But Brea is using what strength she does have to make a documentary, "Canary in a Coal Mine," to chronicle the lives of others living with ME. Using Skype and Facetime, patients share their stories and offer glimpses of their shattered lives in real time.

"It has been a way to deal with the anger and confusion and fear," she said of the project.

Brea recently launched a fundraising campaign on the crowdsourcing site Kickstarter with a goal of raising $200,000 by Nov. 22 to finish the movie, which she hopes will not only bring more compassion to those living with ME but encourage awareness in the medical community and better tools for diagnosis and treatment.

New psyche disorder could label those with ME as mentally ill

Support from the patient community has been "astonishing," according to Brea. "Some are calling it an 'uprising from our beds.'"

The name "myalgic encephalomyelitis" was coined in Britain in the 1960s and is now the definitive name used by the World Health Organization. But in the United States, the disease is called chronic fatigue syndrome, or CFS, an illness that affects more than 800,000 Americans, according to the CFIDS Association of America.

The Centers for Disease Control and Prevention describes CFS as a "profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity." Its symptoms can include weakness, muscle pain, impaired memory and mental concentration and insomnia.

Dr. Nancy Klimas, a neuro-immunologist with an expertise in CFS and ME at Nova Southeastern University in Florida and director of Gulf War illness research at the Veterans Administration, said the name chronic fatigue syndrome is a poor descriptor for an illness that is actually an inflammation of the brain, perhaps caused by a virus.

"I don't think there is a soul that hasn't lived to regret that name because it's derogatory and easy to dismiss as an unimportant illness," said Klimas.

Chronic Fatigue Syndrome: Study Casts Doubt on Mouse Virus Link

A 2009 study linking chronic fatigue syndrome to a mouse virus gave patients validation and hope for a cure. Two-thirds of study subjects with chronic fatigue had the virus, called XMRV, in their blood compared with only 3.9 percent of healthy people, according to the report published in Science.

But the study was discredited later when results could not be replicated and it was discovered blood samples had been contaminated.

Klimas speculates that the illness is an autoimmune disorder that starts when patients either get an infection and "never get rid of it," or the infection actually triggers an immune response -- "like a hit and run."

"What's fascinating about the film is the most difficult thing to get across to the medical community is how serious this disease is," she said. "Patients get up for a few hours and look pretty decent and then go back to bed for a couple of weeks."

She said many doctors have no familiarity with the illness and it is not taught in medical schools but it doesn't neatly fit into any one specialty.

A study in the 2005 issue of Family Practice, which surveyed the attitudes and how much family doctors knew about it, revealed 48 percent did not feel confident making a diagnosis, and 41 percent did not feel confident treating the illness.

Brea said her doctor dismissed her symptoms, telling her he thought it might be epilepsy, migraines or conversion disorder -- "a kind of updated term for hysteria." She eventually consulted an immunologist in Miami, who properly diagnosed her.

Some of the patients interviewed in Brea's film have seen 20 doctors or more before getting a diagnosis.

One, 22-year-old Jessica Taylor of Rochester, England, one of the patients followed in Brea's film, contracted a virus at the age of 14 and has never recovered.

"I tried to keep going and tried not to let it affect me because I wanted to be well and do all the normal things kids do," Taylor said. "I had no time to be ill."

She spent months at a time in the hospital being fed by a gastric tube.

"I am one of the most severe cases," she told ABCNews.com. "All that time I have been bedridden completely and so I have not walked since 2006. At the moment I am stuck in the world of one room in a hospital bed at home."

Taylor said she has "stabbing pain like having hot needles pressed" into her legs and arms -- "all the time." Her muscles don't work, and she often has "brain fog" and can't process information. "Sometimes I try to speak and nothing comes out," she said.

"When I am listening to people sometimes they sound like they are speaking a foreign language."

She said it took her an entire day of rest to prepare for the phone call from ABCNews.com. Fortunately, her iPad has allowed her to communicate with friends and to participate in the film. She recently filmed herself sitting on the edge of the bed for the first time in eight years.

"Being tired is not near to what I feel every day," she said. "It's beyond tiredness. It's in every cell of my body -- a force so strong that it prevents me from doing everything and affects every aspect of my life."

Running a charity to benefit children and young adults with illness from her bed --- Share a Star – is what keeps Taylor going. "When you are stuck not able to do a lot of things, you get a real desire to push on and really make something in the world."

As for Brea, she has seen some improvement with an immunomodulator, magnesium injections and dozens of nutritional supplements. Despite her illness, she hopes one day to be able to have a child.

"I hope to touch people and in doing so to completely change the perception that the wider world has of this illness," she said of her documentary project. "We are invisible and people don't understand how severe and life-altering this is. If they knew it, we'd get the social support we need."

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