By Malia Mendez
On Thursday, Oct. 15, Stanford’s Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and independent filmmaker. Brea’s 2011 documentary film “Unrest,” which med school professor Jonathan Berek called “a cause célèbre,” mosaics poignant B-roll, tender interviews and archival footage to give viewers a glimpse into the daily barriers posed to ME patients. Also referred to as Chronic Fatigue Syndrome (CFS), ME is ill-understood by the general public and stigmatized by doctors and comedians alike.
“Unrest”’s opening scene is an unsettling cold open, wherein Brea with labored breathing and fetal movements crawls her way into bed; the sequence closes with her physical collapse and our visceral discomfort. Immediately addressing the elephant in the room, Berek asked Brea why she began recording such brutal moments with ME like this one. She answered that the footage began as evidence to close the “gap in between what was going on behind closed doors and what [she] was experiencing when [she] had enough energy to go to the doctor,” who assured her that she was “too young to be sick.” Since then, these humble home videos have led to a U.S. Documentary Special Jury Award for Editing at the 2017 Sundance Film Festival, a place on the shortlist for the Academy Award for Best Documentary Feature and a staggering 100% Tomatometer score on Rotten Tomatoes.
Berek began the webinar with an abbreviated screening of “Unrest,” in response to which Brea remarked, “It was really emotional for me to see the excerpt from the film; this is the first time I’ve seen it in two years.” With the same raw pathos that saturates her voice-overs in the film, Brea recounted how she never expected the ME diagnosis or the dramatic life upheaval it necessitated.
After receiving a bachelor’s degree in politics from Princeton University in 2005, she was well on her way to a Ph.D. from Harvard and a career in elite academia; however, ME sharply changed her trajectory. Brea told attendees, “You can’t do what you loved and what you trained your life for … if I read more than a page of a book, I would be suddenly ill or fall asleep from the effort.” From 2011 onward, she began piecing together a new self — one who could not attend a tailgate without suffering extreme post-social malaise and spent Thanksgivings with a wall between herself and her family.
In her TED talk “What happens when you have a disease doctors can’t diagnose,” Brea describes ME as “a perfect custom prison.” Because those affected present such varied symptoms, Brea insisted that her story does not encapsulate the ME experience. Still, she reflected, “What unites us is that we know a common set of triggers … we converge at this destination that we call ‘ME.’” “Unrest” features interviews — often over video chat for accessibility purposes — Brea conducted with ME patients. Her subjects range from a bedridden woman in her twenties to a mother whose diagnosis ruptured her marriage. But in spite of their vastly different positionalities, their rapport is palpable — they know the same brutal toll of ME.
When Berek asked Brea how the filmmaking process had changed her, she spoke at length about this support network she discovered and how it instilled in her a new value system. “This journey helped me to understand the inherent worth we all have,” she said. Accepting that she was in need of medical care and that some obstacles would never fully disappear freed her from the toxic and capitalistic belief that someone’s value lies in their productivity. This perspective shift was ultimately a large impetus for Brea’s return to film.
Despite feeling solidarity amongst themselves, ME patients are still awaiting the same support from their physicians and the broader medical community. Brea explained that often “medical students are not well-trained to handle not knowing the answer” and so they blame victims and fall back on stereotypes as a default response. With an almost amused bafflement, Brea told Berek that her doctors would be frustrated with her for coming to them with such perplexing maladies. A tragically common result of these attitudes is that those affected by ME are marked “problem patients,” and thus indicators for other fatal conditions are missed or dismissed as mere items on a long list of ME complications. “I know people who died of cancer because their symptoms lined up,” Brea mourned.
As if low visibility for ME isn’t enough, Brea suspects other implicit biases further entrench disbelief in ME patients’ pain. “80% of autoimmune patients are women; I can’t help but wonder if this is why we’re not believed,” she said. ME succeeds centuries worth of diseases predominantly present in women that are pathologized and explained away in psychoanalytic terms: hysteria, conversion disorder, somatic symptom disorder. Brea herself recalled numerous doctors telling her that her pain stemmed from subconscious trauma she might never be able to remember. A lethal combination of uneducation and unchecked bias thus endangers and traumatizes ME patients, who internalize blame for their disability.
Directly addressing the medical students present at the webinar, Brea advised keeping an open mind about ME’s causes and being hyper-aware of forces like racism and sexism that permeate our institutions but are often invisible to us. “Follow the basic ethic of ‘believe your patient.’ Listen to them and believe them,” she directed. Brea hopes in addition that more comparative studies can be conducted in the near future to promote health equity.
Brea also commented that the COVID-19 pandemic, albeit tragic, presents opportunities for increased chronic illness visibility, accessibility efforts and immunological research. When Brea heard about the virus this past February, her first thought was that so many would become chronically ill, as even past initial infection, “we’re all at risk for developing COVID-19 complications.” Though those working in medicine will often delay research and thus be unable to support patients with complications post-virus, Brea said, “I’m hoping that [COVID-19] is the moment that finally turns the tide.” She is encouraged by the recent surge in immunology study and compares “watching the long COVID literature” to “watching the last 40 years of ME research on super speed.” This mobilized front could vastly improve care and support for those with disabilities.
In the meantime, Brea will continue advocating for these folks, especially via her global advocacy network #MEAction, whose mission is to “to fight for recognition, education, and research so that, one day, all people with ME will have support and access to compassionate and effective care.” #MEAction’s team includes managing director Laurie Jones, who spoke alongside Brea at the webinar. Jones said she was surprised by the success of “Unrest” upon initial release, but she was astonished at its longevity. “With most films, you’re not able to sustain a campaign for this long. We’re certainly on the road to something,” she said. While Brea did not anticipate where that home video footage would take her, Jones shared that “[Brea] knew that if she set up a space for people, they would come together.”
Though the future of feature-length films remains uncertain in an era of pandemic, Brea hopes to work next with fiction and explore other facets of documentary-making. If we can be certain of anything, it is that no complications will keep Brea from weaving straw into gold.