Three years ago, Jennifer Brea, then a PhD student in political science, was struck down by what appeared to be a severe flu. It turned out to be the beginning of a long illness — including neurological dysfunction and extreme exhaustion — that she has yet to recover from. Discovering that the medical community did not recognize her illness and worse, dismissed it as hysteria, Brea did her own research and discovered that there is a name for what she was experiencing: myalgic encephalomyelitis (ME), a devastating, misunderstood and ignored disease affecting millions.
To call attention to the plight of those suffering from ME, Brea is making a film, titled Canary in a Coal Mine, to offer firsthand insight into what it feels like to live with this debilitating disease. Its Kickstarter campaign, launched just days ago, has already almost met its target, a clear indication that the time for this film has come. Here, Brea tells the TED Blog her story.
When you did you become ill?
I first became ill in 2010. I had 104.7-degree fever that lasted for 10 days. A year later, in 2011, I was at a restaurant with some friends. The check came, and I couldn’t sign my name. I would look at the paper, and I couldn’t move my hand. I found I could no longer draw curves or circles. Over the course of the next day, I went in and out of periods where I would be totally lucid, I could understand everything anyone was saying to me, but became completely unable to think in any language. It was a little like being a dog. I could understand speech, and I could conceive of things in general impressions, and pictures, but there was no monologue in my head.
That sounds terrifying.
I think in some ways it was actually a blessing, because I could not be afraid of what was happening to me. Something I’ve learned is that in order to experience fear, you have to be able to project the future, and for that you need language. You need the future tense. You might even need the past tense. I was living in the present, and that was all that there was.
My neurologist told me I was suffering from conversion disorder: my illness was caused by stress or a psychological trauma that I might not even recall. Although my physical symptoms were real, there was no organic basis of my illness. It was all very Freud.
This doesn’t speak very well for doctors.
Since starting the film, I’ve become much more sympathetic to doctors, because it’s really not their fault. It’s a product of the training they have received. They’re taught to cure the world’s known diseases, and my disease is not taught in medical school. So if they can’t put me in a box, they can’t treat me.
That said, I was shocked. It was the first time I had ever been not taken at my word, had ever been condescended to like that. I started to wonder, well, if I — with my personality and education and privilege — am being treated that way by all of these doctors, what the hell is happening to people all around the country? What would happen if I were walking into a public clinic, or if I’m in a rural area? And what if I’d been someone who hadn’t had the education to feel like I can challenge people who are in positions of authority? This is one of the reasons I wanted to make this film.
Brea and her husband Omar. Still image from Canary in a Coal Mine.
What were you doing while all this was happening?
Throughout this experience, I was doing tons of research. I was getting my PhD in political science, but I was also doing a master’s in statistics, and so had some training to know how to read and understand research. My husband and I were just constantly reading. We’d go to the doctors with stacks of journal articles, and they would say, “Where did you find that, on the internet?” I’d say, “Yes I did. Here’s an article from Nature, here’s an article from Science, here’s an article from the New England Journal of Medicine.” I had one doctor actually make a guttural sound when he tossed the articles on the floor. I mean, I was really naïve — I didn’t realize that most doctors don’t read medical journals. It’s just not the way that system works. Even one researcher — who was a fantastic doctor — was not reading anything on my illness that was being done by people in other fields. She was an infectious disease doctor, but she wasn’t reading what’s happening in immunology, or people who were looking at gastrointestinal stuff.
What’s the difference between chronic fatigue syndrome and ME?
Chronic fatigue syndrome was a name created by a CDC committee in 1988 in response to a series of outbreaks, most notably the Incline Village, Nevada, outbreak of 1984. It was really unfortunate, not just because the name sucks, but because one, there was already an internationally recognized name for the disease — myalgic encephalomyelitis — and two, the definition they came up with said nothing about some of the most severe neurological and autonomic dysfunction many of us experience. So some of our most devastating symptoms are said to be impossible because they are not in the definition.
The horrid name and the exclusion of those symptoms means that many people diagnosed with CFS probably don’t have ME. A lot of people want to lump chronic fatigue syndrome, fibromyalgia and so on into one group. I think we need to study people who are patently self-similar in terms of their histories and symptoms and stop saying “It’s all very murky” when the murkiness is man-made.
That said, I do, at the end of the day, think that strict diagnostic criteria are useful for clinical trials but harmful for treatment. Our bodies don’t obey medicine’s boundaries, and I don’t think many diseases do either. For example, I’ve learned through my own research that what is probably happening to me right now, physiologically, has a lot in common with certain features of multiple sclerosis, HIV, diabetes and certain genetic mitochondrial diseases. Now, who would ever think those literatures should be speaking to each other? But they should be.
To read the full interview, visit the TED Blog >>>