Unrest (2017)

There can be beauty in medicine.

(2017) Documentary (Chicken & Egg) Jennifer Brea, Omar Wasow, Nancy Klimas, Paul Cheney, Stig Gerdes, Lee-ray Denton, Casie Jackson, Ketty Hansen, Ron Davis, Per Hansen, Whitney Dafoe, Jessica Taylor, Darwin Jackson, Jessica Harden, Lee Routh, Sawyer Jackson, Ruby Taylor, Samuel Bearman, Colin Taylor, Randy Denton, Per Fink, Ron Gill, Theo Haugen, Linda Tannenbaum. Directed by Jennifer Brea

Unless you’re a medical professional, you’ve probably never heard of Myalgic Encephalomyelitis (ME). You may be more familiar with its popular name, Chronic Fatigue Syndrome. It’s a medical problem that the medical community has almost no understanding of. There are many doctors who believe it is entirely psychosomatic – in the patients mind  In some countries, that is in fact medical policy.

Jennifer Brea, originally from the Orlando area, was studying for her PhD at Harvard. A bright and vivacious girl, she traveled the world and lived life to its fullest. She was engaged to be married to a handsome Internet analyst (and later professor at Princeton) named Omar Wasow. Life was only going to get better.

Then she got sick, struck by a fever that at its worst measured 104.7 degrees. The fever broke, but she was left with extreme sensitivity to light and sound and bouts of fatigue so all-encompassing that she could barely get out of bed and eventually could only crawl inch by inch along the ground (the opening scenes of the movie document this). Eventually she is confined to a wheelchair but soon she is unable to sit up in a seated position. She is only capable of being prone.

Of course, she sees her doctor, and then specialists, and then other specialists. None of them can even offer a diagnosis. Some told her she was dehydrated and stressed due to her doctoral work. Others told her that her symptoms were due to a long-buried trauma that was surfacing only now. Meanwhile, her symptoms were growing worse. Unconvinced by what her doctors were telling her and determined to get to the bottom of what was affecting her, she did her own research and came up with ME and CFS which is said to affect as many as 17 million people around the world. She went onto YouTube and heard stories that were eerily similar to her own. She knew she had found the source of her problems.

But as she looked into it, she found the depressing fact that despite the fact that her disease was so widespread, there was little to no research being done on it. Few knew how the disease operated and those that did were only in the early stages of understanding how it worked. The more people Jennifer talked to, the more she realized that hope  was being lost on a widespread basis. Rather than face a lifetime confined to bed, many sufferers were taking their own lives.

Determined to make these stories public, Jennifer decided to make a documentary. She enlisted camera crews in England, Denmark and around the United States to capture sufferers of ME/CFS on-camera. We hear the story of Jessica Taylor, a young woman living in Kent, England who has spent her 16th through 21st birthdays in bed and whose inactivity has caused osteoporosis which gives her the bones of a 100-year-old, not an uncommon side effect for ME/CFS sufferers. There’s also Lee-Ray, a Georgia housewife whose husband left her after years of caring for her and when their daughter came down with the disease, finally realized that this wasn’t something Lee-Ray was making up and has since begun the process of reconciling with his ex-wife. One of the few geneticists looking into the disease is Stanford’s Ron Davis who has a personal interest – his son has ME and is unable to speak anymore.

The most outrageous case is that of Karina Hansen, a young girl afflicted with the disease who is forcibly removed from her parents home by the police and confined to a mental hospital in Copenhagen where her parents are refused access to her. Largely due to a Danish physician named Per Fink, the Danish medical establish operates on the principle that the disease is entirely psychosomatic and that removal from the environment which reinforces belief in the disease is the only means of cure. It was only after this proved ineffective that Karina was finally allowed to return home.

Through these stories we get to see how ME/CFS impacts not only the person who has it but their families and loved ones as well. The central story however belongs to Brea and her husband and in some ways we feel a bit of the intimacy between them as we are privy to moments of romance, frustration, and conflict but mostly support and love. Omar sometimes questions the desperate methods Jennifer tries to ameliorate her disease like ingesting a hookworm and living in a tent out in her yard to avoid any vestige of mold but for the most part, he does everything he can to give her a normal life and most importantly to keep hope alive.

The movie keeps the focus mainly on Jennifer herself but gives an adequate amount of time and focus on the other stories as well. As with all things, ME/CFS affects different people differently so seeing the various degrees and results of the symptoms on the lives of different people gives us a bit more of perspective. The only thing I can really fault the film with is the opening sequence may prove challenging to those who are more sensitive to camera motion, as I am; a chronic vertigo sufferer, I found the opening sequence started to bring my symptoms on. I recognize the need for the sequence; it gives viewers a sense of what Jennifer goes through but those like myself who have that sensitivity should be aware that the opening few minutes may be a problem.

That can be hard to do; we look at the prescriptions Jennifer is supposed to take; it’s a staggering amount and personally I can’t believe all those pharmaceuticals can possibly be doing her body any good. It’s no wonder that Jennifer is looking into alternative treatments.

But she’s also not taking her situation if you’ll excuse the pun lying down. She’s helping to organize and was involved with the Millions Missing event in which family members of ME/CFS victims left shoes out in public places to illustrate how he people who have this affliction have disappeared from life (some literally; the suicide rate is high). Most importantly, she’s made this documentary which brings to light the plight of those suffering from this illness and the medical establishment’s attitudes towards it. One can’t help but notice that suffers of Multiple Sclerosis were once upon a time often told the same things by the medical establishment until the invention of CAT scans revealed an actual issue. As of yet there are no tests that show a medical cause for these issues although some work is finally starting to get done.

This documentary goes a long way into not only showing the global impact of the syndrome but also its immediate effects. That gives the film both an intimacy as well as wide perspective, a very difficult wire to walk. This is an important documentary which hopefully will give a greater understanding of the illness not only to the general public but to the medical and scientific communities as well.

REASONS TO GO: This is a heart-rending and occasionally heartbreaking film. You can’t help but admire Brea for her courage. Brea manages to reveal the scope of the disease worldwide and provide intimate details of its effects at the same time.
REASONS TO STAY: The use of the Go-Pro camera at the beginning of the film may be rough for those who are sensitive to jarring camera movement.
FAMILY VALUES: There is some profanity and brief graphic nudity.
TRIVIAL PURSUIT: The filmmakers are mounting a campaign to show the film in medical schools to allow new doctors to get a glimpse into what ME means to the patient.
CRITICAL MASS: As of 5/7/17: Rotten Tomatoes: 100% positive reviews. Metacritic: No score yet.
COMPARISON SHOPPING: Gleason
FINAL RATING: 8.5/10
NEXT: In Circles

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