Movie Club: Unrest

On April 24, the AMWA New England chapter convened via video chat to talk about Unrest, Jen Brea’s autobiographical 2017 documentary about life with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Ellie Lin and Patricia Fonseca facilitated the meeting and Peter Stein provided thought-provoking questions. A mix of medical writers and editors brought insights from their lived experiences to this energetic chat.

The event began with a discussion question about disparities in information-sharing paradigms between medical research centers and peer-led, patient support spaces; the two worlds define timelines very differently. Unrest explored the tension between time spent on rigorous scientific investigation vs. quicker, self-treatment efforts. One example that came up in the chat was fecal microbiota transplant, which was already recommended in patient support groups years before its medical evidence was conclusive. Without time to wait for clinical studies or publications, people with ME/CFS—and other under-researched illnesses—often choose to try interventions that lack strong evidence.

The stories told in Unrest were as much about preservation of credibility during illness as they were about pathophysiology of disease states, so the topic of disability justice came up. One definition of disability justice asserts that human beings have inherent worth regardless of productivity or health status.1 Using patient and physician interviews, the film documented the pervasive lack of credibility projected onto people with misunderstood illnesses. International ME/CFS stories in Unrest ranged from heartfelt family caregiving to graphically abusive experiences in medical institutions. When doctors treat patients as less than human, families sometimes become less willing to take on caregiver roles.

Brea structured the documentary to prove her own credibility as an informed patient. To combat the pervasive stigma that chronically ill people “want to be sick,” Brea scattered videos and photographs of her exploits as a Harvard PhD student, her kayaking adventures, and her international travel throughout the film. Her artistic choice may have been informed by her own experiences being disbelieved.

The term medical gaslighting refers to situations in which doctors disbelieve patients—and commonly assign incorrect psychiatric diagnoses to illnesses with known biomedical causes. Unchecked consequences of medical gaslighting were illustrated in this film, so the group discussed gaps in physician education about ME/CFS. Medical communication strategies to bridge the knowledge gap include patient involvement in clinical study design, widely disseminated continuing education modules, and quick corrections of misinformation and disinformation on social media.

New patient-led research that focused on addressing the medical gaslighting problem in Long COVID was recently published.2 Long COVID is a multisystem, post-viral illness affecting an estimated 65 million people globally as of March 2023.3 It has been miscategorized as a psychiatric illness by some doctors. Like adventuresome, high-achieving Brea with ME/CFS, previously high-intensity athletes with Long COVID are uniquely positioned to combat medical gaslighting with their credibility. The group collectively hoped for a future in which an accurate diagnosis depends less on notoriety and privilege.

Another discussion question referenced Brea’s comment about feeling she had disappeared from her own life, so participants explored the film’s theme of illness and invisibility. Invisibility brought up ideas of elderly patients excluded from clinical research, illnesses that lack adequate research funding, and biases surrounding syndromes without clear diagnostic approaches. Though ME/CFS can be categorized as an invisible illness, Brea chose to be visible. Her work illustrates the power of art as medical communication. Like this filmmaker, medical writers and editors make valuable contributions to the advocacy of visibility.

References

1. Berne, P., Morales, A.L., Langstaff, D., & Invalid, S. (2018). Ten Principles of Disability Justice. WSQ: Women's Studies Quarterly 46(1), 227-230. doi:10.1353/wsq.2018.0003.

2. Re’em, Y., Stelson, E.A., Davis, H.E. et al. Factors associated with psychiatric outcomes and coping in Long COVID. Nat. Mental Health, 361–372 (2023). https://doi.org/10.1038/s44220-023-00064-6

3. Davis HE, McCorkell L, Vogel JM, Topol EJ. Long COVID: major findings, mechanisms and recommendations. 2023 Jun;21(6):408]. Nat Rev Microbiol. 2023;21(3):133-146. doi:10.1038/s41579-022-00846-2