Unrest

I am one of the millions missing, but one who is not bedridden, and I can still work, though at a much diminished capacity. Jennifer's attempt to describe her life and her illness is much needed. I was in tears as she described the difficulty of getting a diagnosis. When I got sick 25 years ago, it took me 6 years to be diagnosed. I was hoping that diagnosis was a little further along than it apparently is in the medical community. That was a major disappointment for me. I wish she had talked more about the cognitive issues. Yes, ME is physical, but the brain fog, the inability to concentrate or stay on task, the disorganization that came with the condition, the struggle to perform cognitive tasks that were once easy (reading maps, remembering how to get somewhere you should be able to, forgetting appointments, short-term memory problems, etc. etc), all add another layer to an otherwise debilitating condition. My accolades for Jennifer for the supernatural strength and commitment it required to put together a great snapshot of our shared nightmares.

Jen Brea started making this film while she was bedbound with a terrible - and terribly misunderstood - illness. It took her three years or more, but the finished product is very polished and emotionally devastating - while also offering notes of hope and uplift. The film follows Brea and other patients as they struggle to find sympathetic doctors and caring family members. Jen's story is the main throughline - she hits a low point after doctors tell her she has 'conversion disorder,' and then she begins to find meaning by connecting with other patients online. We see her formulate the idea for a film as she begins talking with other patients. It is a heavy film about a neglected illness - but there are moments of levity and joy sprinkled throughout. At the screening I went to, the audience laughed at appropriate spots. And at the end, a women in the audience stood up and said she finally understood what had been wrong with her for so many years. Getting this film out to medical professionals will help fill the gaps left by medical schools, which do not teach very much, if anything, about the illness known as myalgic encephalomyelitis. The CDC renamed in chronic fatigue syndrome in the 1980's, but as you'll see in the film, that name has done a lot of damage in terms of misperceptions and stigma.

Jen Brea is one of the severely ill due to ME/CFS. She films herself, directs, interviews doctors and patients via Skype, and edits mostly from her bed in order to document the severity of her disease (and millions worldwide) and how she and her husband, her caretaker, now have to forge a different life than the one they had imagined for themselves.

Patients experience neurological issues with sound and light sensitivity and coordination, pain, POTS, cognition issues, and debilitating fatigue. Exertion whether physical or mental will bring on crashes where symptoms worsen. Doctors and researchers discuss the disease.

Unrest is a spellbinding masterpiece of storytelling, art, and social injustice commentary. Filmmaker Jennifer Brea brilliantly combines hypnotizing visuals, captivating music, and interweaving plot threads to engross the audience and masterfully accomplish what every good artwork should: profound and lasting emotion that spurs its audience to think, feel, and act in new ways. Indeed, and amazingly in a single film, Unrest evokes profound sadness, crushing frustration, mad fury, and finally hopeful epiphany that through this film and its social justice campaign, moviegoers can change the world — not just for the benefit of ME patients, but also for the benefit of the world.

My brain doesn't work as well as it once did, so I hope you'll forgive me for being blunt. This film has been a remarkable gift for the millions of people suffering from the debilitating and almost entirely ignored disease ME/CFS. It humanizes our suffering in a way that has somehow never been done in film before. And it lays out in very simple terms the decades (or even centuries) of prejudice and ignorance that has marooned us here.

At the heart of the film are the true stories of a handful of people with severe ME/CFS, people trapped in their beds for days or for years, some unable to bear even minimal human contact.

I know this hasn't been the most coherent review...so often people with ME/CFS don't say anything because we can't say it well. Watch the movie, you'll get it.