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....
