Documentary and Panel Explore the Challenges of Chronic Fatigue Syndrome

In the first scene of Unrest, Jennifer Brea is lying on her bedroom floor, looking at the camera. She seems tired and in pain. She tries to get up, but falls down. She tries again, holding the camera close. It’s difficult to follow her movements, but we can hear her heavy breathing and moans of pain. After a huge effort, she makes it. She gets to her bed and lies down, exhausted.

Sundance award-winner Unrest is a powerful personal account of what it’s like to be a young woman with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) — a complex and misunderstood disease affecting 15 to 30 million people around the world. Jennifer Brea first felt something was wrong when a mysterious fever left her bedridden. After hearing from doctor after doctor that it was “all in your head,” she decided to do her own research — and to document her path.

The most pronounced symptom of chronic fatigue syndrome is a profound and inexplicable fatigue, which gets worse after mental or physical exertion. Patients also have poor-quality sleep, brain fog, and dizziness upon standing. “The cause of ME/CFS is unknown and there’s no cure for this disease. Treatments to this point have fallen into the ‘experimental’ category and have included antiviral and immune medications, as well as supportive treatments to help with insomnia and orthostatic intolerance,” says Dr. Darren Lynch, who has been treating ME/CFS patients for ten years.

On February 21, Dr. Lynch will be at Hampshire for an expert panel Q&A after the screening of Unrest. The event will start at 5:30 p.m. in the main lecture hall of Franklin Patterson Hall. Joining Dr. Lynch on the panel will be Ronald Davis, professor of biochemistry and genetics at Stanford University and the father of a ME/CFS patient; Rivka Solomon, a patient advocate with the Massachusetts ME/CFS and FM Association; and Ashley Davis Haugen, Hampshire alum 09S, an ME/CFS advocate, and caregiver for a brother with the disease.

“[The event] is an amazing and unique opportunity,” says Dr. Pamela K. Stone, Director of Hampshire’s Culture, Brain, and Development Program and the event organizer. “It’s important to have this conversation with students, faculty, and support services in the Five Colleges,” she says, “because there are students who one day seem absolutely fine and healthy and the next day you find out that they couldn’t come to class because they’re stuck in bed and they can’t get out. And while it may not be chronic fatigue syndrome, this event offers a glimpse into the complexity of having a chronic health issue that really debilitates people even though they don't look debilitated necessarily when they’re okay.”

Dr. Lynch explains that the main challenge to patients and caregivers “is first to find medical providers who are knowledgeable and familiar with treating ME/CFS and then be prepared for the uncertainty of benefit from any proposed treatment that may follow.” He’s hopeful, though, about the future: “After fourteen years of treating ME/CFS and having seen improvement in some patients, I hope that the years ahead provide my practitioner colleagues and me better tools so that we may be of more assistance to a patient population desperate for better treatments.”