Support group screens film to raise awareness of chronic fatigue syndrome

WESTWOOD — A few years ago, Jennifer Brea was a Ph.D. student at Harvard and a newlywed with an active lifestyle, going snorkeling and kayaking with her husband.

Then, after coming down with a high fever, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, which left her mostly bedridden. She is one of a million Americans with a disease that, until recently, doctors did not even acknowledge existed.

Her story is told in "Unrest," a documentary screened at Hackensack University Medical Center at Pascack Valley on Sunday by a Bergen County chronic fatigue and fibromyalgia support group.

A quarter of the people diagnosed with the disease are bedridden, and Brea's film tells her story of finding other sufferers around the world and organizing rallies and support groups to gain funding for research, and, in some countries, gain acknowledgement that the disease exists at all.

"It very often was thought to be psychiatric, which it's not, or psychological, which it's not," said Pat La Rosa, a member of the group and trustee with the New Jersey ME/CFS Association, which sponsored the showing.

She said those with the disease have to monitor their symptoms and adapt their lives.

Judy Machacek, co-leader of the Bergen ME/CFS/FM Support Group, said the group seeks to educate people about the disease, since many don't see its effects.

"This is a serious illness, and most people who have it don't get out of the house, so people aren't aware of it," she said.

Most doctors, she said, are able to treat only the symptoms, because nobody knows for certain what causes it.

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"They're starting to teach physicians about CFS in today's medical schools, but it was not something that was taught previously, so many physicians just think of it as a fatigue-type condition," she said. "Those who are very severely sick really have a challenge of trying to get themselves out of bed and back to some kind of normalized lifestyle."

After the screening — which highlighted cases of people who had been unable to walk since they were teens — some in the audience said they were surprised at how severe it could get. Others were concerned about those who have the disease, but may not have the support of their families.

"I think that's the whole point of Jennifer's doing this movie: to give voice to the people who are so sick that they can't be out there," Machacek said. "We need to have more awareness of how devastating this illness can be." 

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