When Harvard Ph.D. student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgot.
“Chronic Fatigue Syndrome (CFS), also referred to as Myalgic Encephalomyelitis (ME), is a medical condition characterized by long-term fatigue and other symptoms that limit a person’s ability to carry out ordinary daily activities.”
In the 1950s, misunderstanding, misogynist doctors diagnosed patients experiencing ME as hysterical women who couldn’t admit to “angry feelings” which they said the same about MS until thankfully the CAT Scan was invented. Today, only a handful of specialists are familiar with the enigmatic condition. This documentary is filmed through the use of iPhone, professional cameras, and Skype, giving it the intimate up-close look which the subject calls for.
Jennifer Brea might be the first bedridden documentary director in the history of film. Although she is young and looks completely healthy, she is struggling with a disease that affects so many. She is a Harvard Ph.D. graduate and she met her Tech Analyst and public figure husband Omar Wasow, who Oprah remarked that he introduced her to e-mail when he tutored her to use the internet for one of her TV show segments. Omar seems to be an extraordinarily supportive man and helps her so much with her day to day needs. A few months before their wedding, Jennifer had a fever and she went to get a glass of water and couldn’t get up from the kitchen floor. She decided to start documenting everything since their doctors at Princeton Hospital were just as perplexed. A neurologist diagnosed her with Conversion Failure and guessed it stemmed from too much stress or PTSD. For the next several years, she was bedridden whilst experiencing terrible migraines, her hands uncontrollably began to grip, and even more horrifying she would not be able to speak.
Luckily, she found a lot of people suffering from the disease and began to share their frustrating and moving stories. Through the use of Facebook, Skype, and YouTube, she was able to document their lives and give insightful stories. One person shared a story about how he was the best mogul skier on the East coast, now a prisoner to ME, stuck on his couch, tantalized by his view of gorgeous snow-covered mountains and ski lodges that he can no longer use. Jennifer became close with Jessica who resides in Kent, England, and posts on the YouTube channel “One Room World.” Bedridden for almost a decade, Jessica similarly was stricken with a terrible flu. in and out of hospitals for years and hasn’t been able to leave her room for so many years. She, fortunately, has loving parents who are taking care of her when the NHS nurses are not visiting or checking on her. It was staggering to think that she grew four inches and missed out on so many daily activities we take for granted.
The documentary also focuses on Jennifer and her online community, sharing different methods, both mental and physical to battle the disease. Jessica in Kent gives much credence to her imagination, saving her from falling into a pit of despair. She prefers to fantasize about swimming in the gorgeous silent Australian waters and sometimes lays down on her family’s piano bench to play a quiet sonata. Her online community suggested starting a healthier vegan and kombucha diet and really pushed avoiding mold in the home. It seems lots of issues are within our environment and urban toxic-laden air. They suggested she head for a dry climate and in one lovely scene, Omar and she are in the nicest retro air steam you could dream of. There, among the crimson canyons bleeding into the sand that looked like Sedona or somewhere nearby, Jennifer had a jolt of energy and began effervescently running around. Although she can be more of herself some days and get outside to be active, things can take a turn for worse. To this day she still is crippled by the illness.
HealthCare is a major issue in this country, Jennifer and her husband live in a lovely home and clearly are not struggling financially. Jennifer also is fortunate enough to have a specialist familiar with ME so she gets advanced medication and other highly scientific methods like metabolic energy analysis. Most people in the United States can’t afford HealthCare and it is a basic right constantly under threat by our GOP leaders choosing profit over humanity. Jessica in Kent has the National Health Services in England, the NHS is not perfect but it is far superior to United States’ system. In Denmark, HealthCare is paid by taxes and is provided by the government. Jennifer was made aware of the heartbreaking story of Karina who was forcibly removed from her parents loving home and they haven’t seen her for over two years. Denmark doesn’t even recognize ME, they consider it a psychological issue akin to extreme hypochondria. Psychiatrists there believe Karina’s parents are “indulging her” and enacting a slow kind of Munchausen by proxy, keeping them sick or confined. This shows the extreme situation of government-run HealthCare but there is a medical middle ground in this country that must be reached. I kept thinking about poorer patients who don’t have the privilege to have basic access to treatment especially with an elusive disease like this. The film closes out with a globally streamed protest and the subjects remain optimistic that doctors can solve the mystery of ME.
Now available on VOD