A fter years of work and hundreds of hours of footage, Jen Brea’s documentary, now entitled Unrest, recently debuted at the Sundance Resort as part of the Sundance Film Festival. The Bateman Horne Center (BHC) was honored to partner with Ms. Brea and Unrest on one of several screening events.
On Sunday, January 22nd, BHC helped fill a theatre with more than 200 targeted audience members. In attendance were BHC staff members, other health care professionals (including 30 providers from the University of Utah hospital system), patients, family members of patients, ME/CFS Action groups, OMF Scientific Advisory Board members, staff from HealthInsight, staff of Senator Mike Lee, and National Ability Center contacts, among others.
At the conclusion of the film there was an open Question and Answer period. Though the film had been shown a few times already that weekend this was the first screening specifically for patients, family members and other members of the ME/CFS community. Ms. Brea’s husband, Omar, opened the discussion by asking patients in the audience what they were feeling upon seeing the film. The overwhelming response was one of overwhelm, inspiration and deep gratitude.
Ms. Brea said, “You saved my life. The people, the compassion, the friendship among the patients is simply amazing. In you I have found my community and I knew this was a story that had to be told as a movie. It had to be visual.”
Later Ms. Brea shared that, “One of the amazing things about being at Sundance is being just down the road from one of the only clinics devoted to treating people with ME/CFS. The Bateman Horne Center, is one of the very few centers like this in the country.” She then went on to share some of their goals around the film, “… to increase public and private investment in the research, the number of scientists in the field, and as a tool to engage the medical profession.”
Dr. Bateman, Bateman Horne Center founder and medical director, shared her desire to engage more physicians in the care and treatment of patients and in collaborating to make greater advances. She put out a call to the community to come together and work more collaboratively in order to improve care and advance progress. Both Dr. Bateman and Ronald W. Davis, PhD., scientific advisory board director for the Open Medicine Foundation, shared their enthusiasm and optimism that treatments are potentially on the horizon.
Suzanne D. Vernon, BHC research liaison, also in attendance, said “While I am scientist by training, one thing I have really tried to do is end the divisiveness that can be a part of the scientific culture… We do science to solve the hardest problems and help people.” She went on to say, “For me Unrest was riveting. And I felt so sad at the failure of science to explain ME. I hope Unrest is seen by scientists all over the world who are unafraid to tackle and decipher it head on.”
Emma, who works as a social media manager in Salt Lake City, remarked, “What an immense honor to be here. Thank you for letting me see such a beautiful part of this community and learn more about ME/CFS. My eyes have been opened to what this disease is like and all of the work that needs to be done to fight this illness. I will work to do my part to help in the fight!”
As the event drew to a close, Dr. Bateman had a small gift to present to Ms. Brea… Her very own pair of wild socks. Dr. Bateman shared her promise to wear wild socks until we have ME/CFS biomarkers and first-class patient care. The group of doctors, researchers and advocates present all seemed to agree that they need to work together to advance solid science that will bring about progress for patients in the clinic.
More about Unrest
Jennifer Brea was studying for her PhD at Harvard when she first began experiencing the symptoms of ME. Despite marked difficulties with speech and motor function, her physician told her that she likely had conversion disorder: that her symptoms were due to a trauma she could not even recall. It was then that Brea started filming her experiences, eventually deploying crews globally to document a few of the millions whom the medical profession had left behind.
Unrest tells the story of Jen and her husband, Omar, as they face the challenges and upheavals of a life suddenly redefined by disability. It also shows how ME has affected other patients and their families in the UK, Denmark, and the United States, and the physicians and researchers who work with them. While Unrest is a deeply personal story, its universality is compelling: at its heart, Brea’s story is one of resilience, determination, and hope.