I just thought I would have more time.
You can tell a lot about someone with the question: “What are your thoughts on Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?” The answer is “Yes” or “No” and yet the latter has the potential of holding an infinite number of biases stemming from the likes of ego, sexism, and ignorance. It becomes a matter of believing a person when they say they are in pain. It’s about giving that person the time and resources to find a cure once you realize they are but one of a million afflicted in just the United States alone. Like most complex disorders, the causes are unknown and the treatment wide-ranging. But science can only catch up if these ailments are allowed the same credence physical disorders receive without argument.
The best way to earn this response is through public awareness. The stigma that unconscionably remains with conditions akin to “hysteria” over a century ago must be reversed because it’s too easy to joke. “Oh they’re tired? I’m tired too!” isn’t a viable reaction except to tell the world that you’re a jackass. As Jennifer Brea‘s documentary Unrest shares via an interview with Dr. Nancy Klimas, diseases like ME are only thought to be made-up until proof is found. Before the advent of the CT-scan, Multiple Sclerosis (MS) was in the same boat. If so many patients are told they have a mental illness despite physical symptoms, however, they’ll never be in the right place to receive a correct diagnosis. Brea knows this because it happened to her.
Not only did she write (with Kim Roberts) and direct Unrest, Jennifer Brea is also its main subject. This Harvard Ph.D. student was full of life and ready to take on the world when she met and married her husband (Omar Wasow) while pursuing her degree. Stopped by a viral flu, she sought to get better. But as the days and weeks wore on, it wasn’t happening. Psychiatrists told her it was due to repressed trauma or even more simplistically “stress.” They sent her home to pretty much get over it, to overcome what her mind had created as a barrier to living the life she once could. Only through a Google search did she see she wasn’t alone. Finally a visit to an immunologist confirmed the truth.
What’s next, though? This is the question she and too many must ask themselves when the institution built to help (National Institutes of Health) won’t because even they refuse to believe ME exists. The hope is that this movie can open eyes and showcase how prevalent and debilitating it is throughout the world. By documenting her own deteriorating health, Brea has theoretically ensured her issues can’t be dismissed as hypochondria (there will ultimately still be detractors who continue labeling her a faker anyway). By taking to the internet to connect with others like her from their respective beds, she has put faces to an epidemic that can be traced back long before modern medicine. It’s no longer a laughing matter when you witness people literally fade away.
The result is a hybrid talking head and vérité documentary. We watch how Brea and others can be walking and talking like normal before a sudden collapse has them bed-ridden for days after. There’s a young woman who gets so ecstatic about touching the floor with her feet for the first time in eight years that she immediately slumps over and begins convulsing as her body rushes to compensate for the expenditure of energy. And alongside these real-time experiences are testimonials. There’s a mother whose husband left, never believing her illness was physical until their daughter was also diagnosed. There’s Stanford geneticist Ron Davis explaining his tireless work to get the NIH to notice because his own son hasn’t spoken a word in over a year.
Brea includes home videos of herself and others to compare and contrast what they were like before and after ME took hold. She even acquires the story of Danes Ketty and Per Hansen, whose daughter Karina was forcibly taken by Dr. Per Fink because the government’s stance is one that blames sympathizers as the root of declining health. Denmark will kidnap children and commit them because they think these “fakers” need to recognize their own lies. It’s stories like these that show how our world turns a blind eye and deaf ear to anything it doesn’t fully comprehend. Only someone who lives with it like Brea can earn the trust of those who’ve never been trusted. She tasks herself with sharing their communal stories to reach potential allies.
The mix between education and experience is perfectly balanced with each subject bringing something new to the table as far as issues, hope, or despair. We get to see the family members that stick by their loved one’s side and those who don’t as well as the uphill battle those in the scientific community face (let alone the helpless patient withering away in bed). Brea even injects some humor at times with wild goose chases for YouTube cures like magnesium injections or mold removal or hookworms. We can laugh because it’s funny to see so many enthusiastic strangers online championing untested cures when the professionals won’t even deem ME a worthy project for guesswork. The comedy is welcome because we know the inevitable disappointment of failure coming.
But that’s okay because these people are still smiling—they’re still living. They are protesting from wheelchairs with advocates the world over, fighting for every last penny the research needs to continue its quest. It’s impossible not to be optimistic because Brea is such an inspiring voice that never lets her vulnerability get in the way of her hope. She becomes a rallying point, a collector of stories knowing that there’s a good chance many of those she speaks with won’t be long for this earth. That’s why it’s such an important film. It teaches us the facts above speculation and it immortalizes the millions who’ve been told they’re weak, hysterical women (80% of cases are female). Brea puts us in their homes and finally makes us see.
courtesy of Shella Films