By Sarah Rappaport
BU News Service
Jennifer Brea was pursuing a Ph.D at Harvard when she was struck by a mysterious ailment that wreaked havoc on her body. Previously energetic and well-traveled, she suddenly found herself inexplicably tired, fatigued by simple tasks and struggling to walk. At times, she could not even get up after a fall.
Physicians initially told her it was all in her head, but Brea was eventually diagnosed with myalgic encephalomyelitis, also known as chronic fatigue syndrome.
“Unrest,” a film Brea made to chronicle her struggle with the disease, offers insight into the impact of the often misdiagnosed disease. It was featured on the second night of the GlobeDocs Film Festival at the Coolidge Corner Theatre in Brookline on Thursday.
Up to 2.5 million people are estimated to be affected by chronic fatigue syndrome in the United States alone, according to the Centers for Disease Control. Additionally, the National Academy of Medicine states that 84 to 91 percent of people who suffer from it have not yet been diagnosed. Brea’s film suggests this is due to a global stigma and lack of understanding surrounding the disease.
Part of this lack of understanding is due to the fact that its symptoms seem to mimic those of a variety of other conditions. Some of the known symptoms include profound fatigue and cognitive impairment according to the National Academy of Medicine. Others include pain and increased risk of recurrent infections.
Chronic fatigue syndrome was historically treated as a psychiatric disorder, according to Brea’s film. Physicians thought symptoms were the result of mere hysteria and they disregarded or institutionalized patients. Many of these patients were women, who are two to four times more likely to develop chronic fatigue syndrome than men, according to the the Office on Women’s Health, a division of the U.S Department of Health and Human Services.
Brea’s film focuses on more than her own journey with chronic fatigue syndrome. She also tells the stories of fellow patients who struggle with the illness, shining a light on how they cope with their diagnosis and its effects on family members.
During the film, Jessica, a young patient from the United Kingdom, discusses one of her coping mechanisms. After her illness left her unable to get up, she would visit places in her mind in order to stay sane. In the film, Jessica takes her first steps on solid ground in eight years.
As we see in the film, Brea’s search for answers and global allies eventually lead her to form #MillionsMissing, a global movement that promotes awareness of chronic fatigue syndrome. The #MillionsMissing movement seeks to inspire conversations about the stigma around the illness and draw attention to a disease that is underfunded and under-researched.
“We really started to build, in some ways, this second culture and second way of being on social media and in the friendships that we formed with each other,” Brea said in a post-show Q&A with Globe reporter Beth Teitell over Skype.
“My saving grace was the art and the community, and being able to go online and connect to other patients,” she said.
Alina Kaminsky, who has lived with the illness for three years, attended the “Unrest” screening and said the film gave her hope and validation.
“I basically felt that finally there’s something on film that shows what I’ve been living [with] for three years,” she said.
Nancy Belkov, another attendee, said she hoped the film would spur important research. Her niece also suffers from chronic fatigue syndrome
“This movie will help [people] understand the seriousness and extent of the situation,” she said.
Clarification: An earlier version of this story contained an out-of-date term when referring to myalgic encephalomyelitis.