This is one of the best descriptions of ME/CFS I have ever come across. After all my research, I still continue to learn new things. Even if you don’t read about her film towards the end, the first half is an excellent glimpse into this disease, with a bit of history, politics, epidemiology, symptoms and her personal experience. Well worth a read.
HEALTH TED Fellows
Posted by: Karen Eng
October 25, 2013 at 4:00 pm EST
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.
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.
When did ME actually get named ME?
There have been hundreds of cases of ME outbreaks documented in the medical literature going back to the 1930s in places as disparate as Los Angeles, South Florida, Iceland, London and Durban. In the 1930s, doctors first thought that it was a new kind of polio, and in fact, you would often see ME outbreaks happening alongside outbreaks of polio. They even wrote journal articles about how one might distinguish between the “typical polio” and this new disease.
In 1955, there was an outbreak in London, at the Royal Free Hospital. Nurses and doctors — but mainly nurses — came down with the illness, and a doctor who was treating patients there started doing more research and writing up reports. At around the same time there was an outbreak in Iceland, one in Scotland and one in Durban. So researchers were writing about this, and sharing the information in their medical journals, and they were citing each other. People knew it was happening.
Often the disease was named for the place of the hospital: Royal Free Hospital disease, or Iceland disease. In 1956, Melvin Ramsay coined the term myalgic encephalomyelitis. Myalgic, meaning muscle pain, encephalo, meaning brain, myelitis, meaning the peripheral nervous system, the spinal cord and so on. ME was ultimately recognized by the World Health Organization and got its own diagnostic code in its International Classification of Diseases. So there is technically a diagnostic code in the US that one can use, but no one ever does.
In the mid-1980s, there was an outbreak of ME at Incline Village, Nevada, a small community near Lake Tahoe, where several hundred people over the course of just a few years came down with a severe, flu-like illness, which then progressed into these strange neurological symptoms that we know are typical of ME. It affected their cognitive ability, their ability to add and subtract, to write and to speak. The town doctors called the CDC, and said please come down, something really crazy’s going on here. When the CDC experts came, they did not actually see any patients. They looked at a few charts, skied and made up their minds that it was a case of mass hysteria.
Do we know yet what causes it? If it’s an outbreak, that implies that it’s either an infectious disease or an environmental disease.
Possibly both. First, the infectious component. There are many anecdotes that suggest a temporal and spatial commonality: five teachers in a lunchroom, or four kids who go out sledding trip, come back, and are never the same. When you see that you think: contagion.
No one really knows what the virus is. I can tell you that from the researchers I’ve been talking to, it seems that it’s possible the trigger could be one of several viruses within a family of viruses. It might be triggered by an enterovirus or a herpesvirus, of which there are several. The tricky part is, you look at someone with ME, and they often have high concentration of a number of viruses which can cause some very nasty neurological effects. These are common viruses that most people will all have once they reach a certain age, but our immune systems can’t suppress them. The question then becomes, did these viruses cause this illness? Or are they opportunistic infections arising as a result of an acquired immunodeficiency?
Some say that you need not just the presence of a virus, but an individual who is susceptible. There may be genetic factors: there are several people who contacted me where multiple family members are sick. There is certainly a huge gender dimension: 70–80% are women. There may also be an environmental factor. We know that environmental toxins can alter immune systems and make certain individuals more vulnerable to infection.
It’s really complicated, in part because patients often go years before they’re diagnosed. Doctors and scientists are in essence trying to reconstruct the Big Bang: no one was there for it, causation is really hard to tease out, and so all you really have are your theories.
This idea of the importance of individual factors is not so strange when we look at some other infectious diseases. Prior to the vaccine, many people who became infected with the poliomyelitis virus were asymptomatic, others became ill and recovered with no lasting damage, while others were severely paralyzed for life. Diseases are always multifactorial, so saying ME is “complex” is true but a nonstarter.
What’s the state of research on ME?
There’s a body of literature, but very little funding for research. There’s more funding for male pattern baldness in America than for ME. The research that has been done clearly shows: 1) we have things wrong with our immune system, 2) there’s clear evidence of neurological damage, 3) there is severe mitochondrial dysfunction and 4) there are some very interesting things happening in our microbiomes.
So there are around 20 different ways that you can triangulate this disease with specific tests, if you knew which tests to run, but there’s no biomarker. That really confused me at first. What do you mean there’s no biomarker? By doing a more sophisticated analysis of EEG data, we can, with a very high rate of accuracy, identify this disease; we can look at things like cytokine markers, or natural killer cell function. We can look at cerebrospinal fluid and mitochondrial function. Some of the abnormalities you’d find are not unique to this disease, but the joint probability of X, Y and Z all falling into a pattern in a single person and that person not having ME is basically zero.
But what we really need, I am told, is a commercially deployable test, a single thing that we can measure that makes it simple and scalable. And I don’t know if we’re ever going to find that, but even with our current technology, if doctors ordered the right tests and knew the symptoms to look for, I think that they could be diagnosing this now. That’s not happening, and doctors don’t know about the science. So in the doctor’s office, I have “hysteria,” and then when I talk to scientists, I have a really mysterious, fascinating disease. And they tell me, here’s how your disease is like AIDS. And here’s how your disease is like multiple sclerosis.
It’s a really tragic thing — there are a lot of people who are severely mistreated because of this. There are people who are getting locked up in psych wards. There are people who are encouraged to exercise and, as a consequence, are permanently harmed. There are parents whose children are taken away from them. There are people who become homeless. It’s just really hard for me to fathom the waste of life that this tragedy has created. This happened with multiple sclerosis before we had MRI machines, and we used to put people with epilepsy in psychiatric wards. So this is nothing new. I’m convinced this will happen again with another disease, even when this one is solved, unless our entire approach to medicine changes.
How hard is it for a patient to get diagnosed? And once you suspect you have ME, what does one do?
There are a few doctors who are knowledgeable, and it’s really good to find one of those if you can, but you’ll probably have to pay out of pocket, so it can be quite expensive. Many tests require a research lab; they’re not something most people would have access to. There’s a woman we interviewed who was taking an experimental drug that can cause amazing remission in some, but it costs $40K a year.
There’s really no clear treatment. Patients try different things — antivirals, immunomodulators, or Ampligen, which is an experimental drug that works extremely well in a subset of patients. There’s no magic bullet. You have to try different things until you find what does. So much of the information we are working from is anecdotal. There are definitely people who are able to find some improvement from the off-label use of drugs, or through nutritional and dietary interventions, but many never return to the health they had before.
The most important thing when you get this is complete bedrest. I so wish I had known and been advised to do that, but I was a PhD student in the middle of a hectic semester. And culturally, taking care of our bodies really comes way below a strong work ethic and measurable success in our ranking of priorities. With this disease, you do not exert yourself, you do not exercise, or you will pay. Unfortunately, that is exactly what most doctors will tell you to do — exercise and you will get better — even though that can lead to a permanent worsening of symptoms.
What prompted you to make the film?
Before I became ill, I had never had the experience before of being so voiceless and so powerless. I was frustrated, and I needed a some place to put that. At that point, I had almost completely lost the ability to write. Ordinarily I would journal, but I was unable to do that, and so I started doing these video diaries on my iPhone, really more of a personal thing, to just try to process what was happening. As time went on, I became more and more enmeshed in the community, and I realized there was a broader community.
I was also reading Osler’s Web by Hillary Johnson, about the outbreak in Incline Village that happened in 1984 — when I was two years old. I thought, it’s been 20 years since this big outbreak of my disease happened, and the social space around it, the interaction between the medical community and people with my illness, has barely changed. I also watched a film made in the late ’90s called I Remember ME, and throughout, there’s this really hopeful kind of message of, “Change is just around the corner.” I was in high school then.
I had this sense that the clock had been ticking away my whole life. Everyone living in their moment always feels like they are on the cusp of change, yet little has changed. And if I just sit here and do nothing, there’s a good chance that 30 more years will go by, and we’ll be in exactly the same place. I felt I had to put all my chips on this and make a film that would break through the bubble of the way people perceive us. And so I thought, I’m not a Hollywood celebrity, but I have some resources, and I’m sick but I’m not nearly as ill as some people are. I can move my hands, I can go to the bathroom. That’s enough for me!
I also hope to convince more scientists that this is not only a really serious illness worthy of their attention — it can cause death in severe cases — but it’s also a fascinating puzzle. Doctors find mysterious illnesses annoying and hard to deal with, but scientists want to go to the frontier. And I think that’s where we are with ME. All the exciting stuff happening in science is where our disease lives. It’s about the non-human components of our body — our microbiomes — and the smallest parts — our DNA, and everything that’s intracellular: organelles, protein coding, epigenetics and mitochondria. Not only do you have these systemic biochemical changes that can affect what’s happening inside cells, but different systems speak to each other across systems in ways that we didn’t previously understand. It’s extremely fascinating. So I want to say to all those scientists: “Pack your wagon! Come out West.”
You’d never made a film before, so how did you go about starting?
I partnered with a woman named Kiran Chitanvis. She’s amazing. She’s not a documentary filmmaker; she writes and directs narrative films, which was a really great fit, because I was seeking to make a creative nonfiction film.
As important as the dry facts are, before you talk about needing biomarkers, or what the policy changes are that we need to see, you have to really give people an opportunity to know what it feels like to live with this disease. I don’t think that’s ever happened before. That’s what our goal is, really. It’s not the end, but it’s a good first step.
I don’t think that most people know how serious it is, and also we just don’t really have, in our cultural imagination, a framework for getting sick and then never getting well — collapsing when you’re 25, and then still being in bed 15 years later. We understand death, but we don’t understand life in prison, where disease is concerned. I don’t think that’s an exaggeration. Some of the most severely ill haven’t sat in a chair for seven years, or haven’t left their bed without a harness.
Have you started production?
We’re still technically in pre-production. We launched our month-long Kickstarter campaign on October 22nd. We’ve raised 90% of our goal in less than three days. It’s incredible. People are talking about this like it’s our one shot, or the shot we never thought we’d have. We are now pushing forward to raise our entire budget on Kickstarter. We started filming some preliminary interviews to create video for that campaign, and also to just dive in and begin to understand the story. We are making a feature-length film, so we’ll start production early next year.
How will you participate? Aren’t you usually at home?
I’m hoping for a miracle, but absent that, we’ve been experimenting with two things. One, there was a shoot we did, with a woman in Toronto, where we hired a crew to film at her home. We’d made a shot list, and through Google Hangout, we were able to be in the room with her and the film crew the whole time, having a conversation about what was happening. So there’s a lot of remote directing, which is much easier to do now with Facetime, Skype, and iPads.
We also have a poor man’s Interrotron. The Interrotron is a device that Errol Morris developed back in the day for conducting interviews with subjects where they would look at him, but in looking at him, they were actually looking directly into the camera, using a series of teleprompters and cameras. The result is direct eye contact with the director, and by extension, the audience. We’re doing the same thing here, only we’re using modern and mobile teleprompters, each comprising an iPad and mirrored one-way glass.
When we shoot in New York, I’m there in an adjacent room, but because I’m interviewing over Facetime, I could be anywhere. I could be at home in bed, and I can send Kiran to London while I conduct the interview from Princeton, NJ.
What happens physically to you if you overextend?
All my symptoms get worse. I might just collapse: I’ll be walking and then just go pfft. I might stand up and have my heart rate go up — something called postural orthostatic tachycardia. That, for me, is what the dizziness is. It also happens if I eat starchy foods, because I have severe glucose metabolism issues, so I might eat too many strawberries and then, you know, drop to the floor. Often when I overexert myself, I can’t breathe. It’s not a question, really, of getting enough oxygen in my blood, although my breathing is certainly affected by this. But rather that my cells can’t breathe, because they cannot produce energy under aerobic conditions.
A lot of the things I do for my health are about treating myself as though I’m a long-distance runner, because that’s essentially what I do when I walk to the kitchen. I’m running a marathon, so things like pacing help, electrolytes. I’m also on a high-fat, ketogenic diet that was first developed for children with epilepsy.
There’s still more doctors to see, and there’s still a lot more treatments to try, but I have no idea what’s going to work for me. And the craziest thing about this is you find these people who are sick for 15 years and then the 300th thing they try, suddenly everything changes. And so I think that it’s really important not to give up hope, and to keep trying new things.
It’s been three years of your life now. Where do you think you might go once you’re better? Have you thought about going into medicine yourself now? Has your concept of your life changed?
I don’t really think a lot about the future. I think that’s a really important part of staying sane. I think that giving up the future is necessary, and it’s something that happens, gradually, without even thinking about it. It’s not about abandoning hope: I believe I can get better. I just have no idea when or how or what better will look like. So I focus on what I can do, right now.
Still, I do fantasize about having the chance to hang out in a research lab and entertain some of the hypotheses that bubble up from patients, but have never been tested. There’s a lot that may not be on the radars of doctors treating this and scientists studying this because they don’t have the access to patients that we do. We have ourselves and we are constantly self-experimenting.
I love telling stories, and I think that I have never before in my life found anything as magical or fulfilling as making film. This is definitely not my last film. It’s the one thing I’ve found that challenges me intellectually and creatively. I love being a researcher, I love doing academic work, but I also need to do mission-driven work. This gives me the opportunity to do all three. I believe that we will make a beautiful film and it will change things forever for our community.
It started as a project that was about helping me to cope with what I was going through, and it’s become about something so much larger than myself, more universal than my specific disease. There’s this weird feeling of “This will happen, it will work, because it has to.” It’s a feeling of when there’s something that is wrong in the universe, something that is unjust or untrue — there’s a kink in the line and all of that force wants to be unleashed. I believe that the universe wants to right itself.