A new documentary, Unrest, explores myalgic encephalopathy (ME), also known as chronic fatigue syndrome.
The film was premiered at the Sundance Film Festival 2017 where it received an award for editing. It has since been critically acclaimed, including an audience award for the best documentary feature at RiverRun and an Oscar nomination.
Jennifer Brea, the director, begins the film with her own experiences. She was studying for her PhD at Harvard and about to get married when she developed a fever that left her bedridden. Doctors were unable to give her an adequate diagnosis, with one telling her that she had conversion disorder as a result of a previous traumatic experience that she might not even remember. After doing her own research online, Jennifer found others with similar symptoms that had been diagnosed with ME. The film, shot from a first-person-perspective, goes on to explore her experiences with the disease and those of the other people she has met online with it. The director’s experience is central to the documentary, giving it a personal and honest perspective that it would have lacked if someone unaffected by the condition had told the story.
The documentary shows Jennifer experiencing the symptoms of ME: difficulty moving, extreme fatigue, pain, light and noise sensitivity, numbness, fist clenching, and a worsening of these after exertion. These scenes are difficult to watch; at one point when she is dragging herself up the stairs on the floor she tells her husband not to stop filming. Other people from around the world also share their experiences with ME. One girl called Jessica from the UK spent four years between the ages of fourteen and eighteen in a hospital in a semi-coma.
These stories also highlight the stigma and misunderstanding that people with ME face. Jessica says that her hospital nurses would become frustrated with her for not recovering, and another woman with ME and her husband talk openly about how he did not believe she was really ill until their daughter also developed the condition. There is a particularly uncomfortable cut to footage of Ricky Gervais, a comedian, talking about ME, “that’s the one where – don’t feel like going to work today.” Doctors, also, show a lack of understanding about the condition. Patients face slow diagnoses, misdiagnoses, and arguments over the causes and even the biological existence of the condition, as well as limited treatment options and misrepresentations of symptoms. Jennifer described talking to doctors about symptoms; “I would talk about burning in my brain or […] I would collapse on the floor and couldn’t lift my head.”
Later, she saw her medical records calling her symptoms “headache pain.”
This widespread misunderstanding of ME is one of the reasons that Jennifer’s documentary is so important – faced with personal footage of the effects of the disease, it becomes impossible to deny or minimise its consequences. Those affected by ME, and their friends, family, and carers, are advocating on behalf of the condition around the world. Catherine Hale, an ME activist and leader of the Chronic Illness Inclusion Project, says,
“ME activists are so distressed and angry because we’ve had our reality denied by almost everyone around us […] it’s a kind of abuse.”
