November 17, 2018
Jen Brea
Expert Q&A

Living With ME/CFS—and Filming It

by David Tuller, DrPH  

Many people, including some doctors, still believe that the illness known as “chronic fatigue syndrome” is a psychiatric or psychosomatic disorder. But scientists and health officials have increasingly recognized in recent years that the condition is a serious disease marked by significant immunological and neurological dysfunction. In many, if not most, cases it is triggered by an infectious illness, although exposure to environmental toxins, mold, or other physiologic traumas could also play a role.

In the U.S., an estimated one million people suffer from the illness, some of them largely unable to leave their homes. Most remain undiagnosed. Patients tend to dislike the term “chronic fatigue syndrome” because they believe it misrepresents and trivializes the illness. The core symptom, according to a major 2015 report from the Institute of Medicine (now the National Academy of Medicine) is not “fatigue” per se but the fact that patients experience serious relapses after even minimal exertion—a phenomenon the report called “exertion intolerance” but that is also often called “post-exertional malaise.”

Many patients therefore prefer to call the disease “myalgic encephalomyelitis,” or ME, which translates as “inflammation of the brain and central nervous system, accompanied by muscle pain.” That name was coined after an outbreak of illness at a London hospital in the mid-1950s and has been used since 1969 by the World Health Organization, which classifies it as a neurological disorder. In the U.S., government agencies now often refer to the illness as ME/CFS.

Jen Brea had never heard of ME/CFS before she got sick. After spending a couple of years traveling in far-flung parts of the globe and filing journalistic dispatches, Brea enrolled as a political science graduate student at Harvard University. But at age 28 she was felled by a fever, and then suffered recurrent bouts of illness. Medical tests proved unable to pinpoint a reason for her string of poor health, and a neurologist told her she had “conversion disorder”—a psychiatric condition in which people purportedly experience their emotional distress as bodily symptoms.

It took Brea a year and a half to finally receive a diagnosis of ME/CFS from a well-known specialist in the field. Even before then, she had begun to document her perplexing experiences on camera. As her journey continued, she decided to gather the material into a film—even though she had never directed one before, much less while largely confined to her bed.

The resulting documentary, Unrest, was acclaimed at the 2017 Sundance Film Festival. Since then, the film has been shown on PBS and received major media coverage around the world; it's also available for streaming on Netflix. It has become a valuable tool for jump-starting public conversations about the disease. ME/CFS patient and advocacy groups in the U.S. and Europe have staged many screenings to raise awareness—just as UC Berkeley’s School of Public Health did in February 2018, followed by a panel discussion. We spoke with Brea in advance of the event about Unrest and her experience with the condition, which she refers to as ME.

How did you first become sick?

In 2011, I was sick for about ten days and had a really high fever. After the fever broke I started feeling dizzy. I started walking into door frames and knew something was wrong. The doctor ran a battery of tests and everything came back normal. So over the course of the next year, I would feel completely normal. But then anytime I had any kind of infection, I would crash and end up in bed. And it got to the point where I went to the doctor and said, I’ve been in bed for half of the past year.

Looking back, the key thing that I really notice now is that immediately after the fever I had a mild case of ME. It was already there. I can understand that now. I would go out on a bike ride that would normally be six miles out, six miles back, but I would have to call a cab to get back. And I’d go skiing and could ski but then I’d crash afterward. I was having that kind of series of energy crashes, but only when pushing my athletic limit. And I kept doing that over and over again, thinking I was fine. I kept being told again and again there was nothing wrong with me. Finally, after about 18 months I completely collapsed and ended up bedridden for many, many months. That’s when I started getting referred to specialists to try to figure out what was wrong.

And how did making the film come about?

I started filming myself before getting the diagnosis. That spring I was getting worse and worse. I was referred to a neurologist because I kept having all of these neurological symptoms—I’d suddenly lose the ability to speak or to move. He diagnosed me as having conversion disorder. I was told that all these symptoms were part of a past psychological trauma. I thought that diagnosis made absolutely no sense, and it was starting to become apparent to me that doctors had no idea what was going on and wouldn’t be able to help me.

That’s when I started filming myself. In the beginning, it was just a space to put that fear and that grief and that anger of having my life falling apart. I think in the beginning I didn’t know what I was going to do with the footage. It was really just to document what was going on. I’d lost the ability to read or write. I’d conk out four hours from the exertion of sending an e-mail. Writing was always the way I made sense of the world and what was happening to me, and having lost that, I needed a way to process and understand the experience, and that’s why I started to record myself.

And then the intention to make a film was a much bigger ambition. That really came when I went online and started meeting people in the community. After my diagnosis, I thought I was suffering from a rare disease that no one had ever seen, like being struck by lightning. Once I found my own story repeated by thousands and thousands of people who reflected a population of millions, I realized I wasn’t alone. This had been happening for decades.

Did you have any idea that these people were out there?

I’d never heard of anything like this before. I didn’t think you could be a young adult and get sick like this. I didn’t even have any awareness of autoimmune diseases. My reaction, having been a journalist, was that this is the most insane story. How is it that all these people are sick and survive in this state and nobody is talking about it? I was always interested in things that have remained hidden and stories about unjust situations. This was a social justice issue. And so I thought I would take what I was filming and actually go and make a film.

Are you pleased with how much attention the movie has gotten in the last year?

The last year has really been about introducing the film to the world, and doing all the things you do for a documentary film on any subject. We’ve had almost as much success as you can possibly have in the traditional film world, being at Sundance, having PBS broadcast it, and an incredible amount of press coverage. We’ve had at least 300 individual pieces of media about the film, and a part of the goal is to start to create a kind of viral public conversation that we’ve never had around the disease. And I think we ‘ve achieved that, and so much of this has involved the community scheduling and hosting screenings around the world. The community-organizing side of it is so important—a film is something that anybody anytime can organize an event around and bring together people who care about it. It’s helped create communities and groups around the world that didn’t exist before, which can endure to further the effort.

It was also amazing to see what happened on the micro level. I’ve gotten so many e-mails that are like, I’ve been sick for 11 years, now my husband finally understands what this illness is and what it does to me. I heard from someone else whose whole family watched the film and then crowdfunded for an electric wheelchair for her, whereas before they never really understood. It’s hard for people to know how they’re supposed to act and support you. Research is what we need, but that’s long term. The film helps people to feel better understood in their lives now.

The movie doesn’t go much into the current state of research or controversies over the illness. Why did you make that choice?

I wanted a film that had some longevity, that could survive changes and could also influence a much wider community, people with other chronic illnesses. There was no point in making a film that would be watched only by people with ME. I think going too far on science that might be disproven later or on the politics that might change was a problem if you wanted to create a piece of work that could be used for the next ten years. I also wanted people to be able to use the film in a really flexible way. You can screen the film and then organize a conversation about the PACE trial, or about caregivers, or about the lack of care. You can do it in Norway or the U.K. or Pakistan.

Film is not the right medium for presenting a summary of the research. In some ways the goal of the film was to make it clear that this was a serious and devastating disease that destroys lives. And once you come to terms with that, then I think you become interested. It’s been a way to break through the noise a little bit and get people interested.

So what’s the next step?

The next phase is really figuring out how to go even deeper into medical education. I’ve had that experience of meeting doctors and scientists who have encountered the film, and I need to figure out how to scale that up. I have loads of ideas and plans for doing that. But we’re really at the beginning of how it can be used as a tool.

Doctors never see patients at home, they never see what it’s like to live with a major illness. They get a very narrow slice of their patients’ lives. So what I’m focusing on now is that second phase. We’ll be doing screenings at Harvard, Columbia, and Stanford medical schools, and also doing a lot of outreach to encourage doctors to watch the film. We would like to do more outreach to schools of public health. Everything is a question of having the time to do it.

Also see Unlocking the ME/CFS Puzzle.