Film Review: “Unrest” — A Powerful Study of Life on Hold

Jennifer Brea’s absorbing and moving documentary about Chronic Fatigue Syndrome is a stunning achievement.

Unrest, directed by Jennifer Brea. Screening at Somerville Theatre on January 24.

A scene from the documentary "Unrest."

A scene from the documentary “Unrest.”

By Peg Aloi

Jennifer Brea’s riveting documentary explores the filmmaker’s struggle with ME, or Myalgic Encephalomyelitis (commonly known as Chronic Fatigue Syndrome). Unrest begins in the dark, with sounds of labored breathing. Then there is a close-up via blurred video footage that obviously been shot on a smartphone: a woman is struggling to walk down a hallway and collapses. This is Jennifer Brea, the filmmaker. We then see photos and videos of Brea from a few years earlier: she is an attractive, intelligent girl, a promising student. We see her hiking, kayaking, and dancing at her wedding. While studying towards her PhD at Harvard University she met her future husband Omar: their courtship is recounted as a funny story of love at first sight by Omar, who can’t believe his good fortune when she asks him out. Then Brea suddenly became ill with a high fever and infection. She “recovered” from the initial onslaught, but was still unwell.

Brea had repeated infections, which required antibiotics. She was tired and in pain, eventually losing the ability to even sit up in her wheelchair. In one of the most medically sophisticated cities in the world she was seen by different doctors; they all insisted nothing was wrong, or suggested that it was a psychological condition known as “conversion disorder,” what was once referred to as “hysteria.” Somewhere along the way, frustrated that she wasn’t receiving any help or understanding, she began documenting her illness on video, eventually widening her scope and making Unrest.

Brea offers a general explanation of ME’s history: Chronic Fatigue Syndrome began to become widely known in the 1980s, when news stories about unusual and isolated epidemics were first publicized. The disorder was little understood and even ridiculed. But with the birth of the internet, support groups began to spring up, and awareness slowly spread. Because there is no clear test for the disorder — it offers a cluster of variable symptoms — diagnosis is difficult and very few specialists exist. Knowledgable doctors have very long waiting lists of patients wanting to be seen.

Through various online support communities, Brea contacts a number of people with ME and they share their stories. There’s a young woman in England who is so weak she can’t leave her bed. One American woman reports being devastated after her husband left her, and became even more distraught when her own daughter was diagnosed with ME as a teenager. And in Denmark, a nation that does not officially recognize ME as a physical disease, a young woman was forcibly removed from her home by the police and brought to a medical facility run by a doctor who believes ME is simply a psychological condition. Her case became the basis of a nationwide protest that garnered international attention. One young man with ME, his condition so severe he no longer speaks or moves, is the son of a doctor who has become a renowned ME specialist and patient advocate.

Unrest is more than just a collection of personal narratives and anecdotes. Brea brings in fascinating information from researchers and doctors who specialize in ME, a condition which is believed to affect over one million Americans. ME is twice as common as multiple sclerosis worldwide, and is now treated in the medical community in a way that is similar to a number of auto-immune disorders, such as fibromyalgia, and lupus. These disorders are far more common in women than in men. In one stunning sequence, Brea looks at archival photos and documents of women with “hysteria” whose facial expressions and bodily contortions look remarkably like those of the ME sufferers in the film. One researcher explains that ME’s complex sets of symptoms led to the disease being more or less ignored (even dismissed) by the medical community for many years. Indeed, Brea supplies recent statistics that indicate that ME research is remarkably underfunded, especially when compared to other more well-known but less common diseases.

Of course, Brea documents her own struggle, which includes her struggle to do copious amounts of research — when she is feeling up to it. She has tried a number of supplements and holistic treatments, but it’s hard to know which ones are effective because she takes so many at the same time. One course of treatment with an anti-viral medication had her feeling so good she attended a day-long local festival, seeing friends she had not seen in ages. But, by the time darkness fell, a smiling and energized Brea was in agony again.

More recently, her research has uncovered that some ME sufferers have found relief by eliminating contact with mold; in order to experiment with the potential of this discovery, Brea and Omar live in a tent in their backyard and constantly wash their clothes. Omar (now an assistant professor at Princeton and a co-founder of the social network BlackPlanet) is tender and supportive, but Brea records the irritation he feels when he’s asked to change his clothes hourly. Indeed, the hallowed-out personal relationships of people with ME form a big part of the conversation: many of them refer to themselves as being “missing” in their own lives, inevitably isolated from everyone but their caregivers. Suicide is a frequent topic of discussion. Their gratitude for technology-based support systems like Skype is palpable.

I personally know about a half dozen people with ME, some of them long-time and close friends; it would not surprise me if other viewers of this film also know people with this debilitating disorder. Brea’s absorbing and moving film is a stunning achievement, and not only because it’s a remarkably skillful debut in documentary filmmaking, or that it is the result of the dogged determination of someone whose energy and mobility are compromised. With Unrest, Brea has crafted a film that will no doubt improve awareness, outreach, and support for many people whose visibility and voices have been too dim for too long.


Peg Aloi is a former film critic for The Boston Phoenix. She taught film and TV studies for ten years at Emerson College, and currently teaches at SUNY New Paltz. Her reviews also appear regularly online for The Orlando Weekly, Cinemazine, and Diabolique. Her long-running media blog “The Witching Hour” can be found at themediawitch.com.

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