FFF 2017 Day 4–It’s All in Your Head–Confronting the Struggles of Chronic Fatigue Syndrome and an Interview With Jennifer Brea


Jennifer Consults With a Moviegoer Outside the Enzian After the Film

Perhaps the bravest among us are those who stand up to fight, even when they can’t stand up. That’s the dilemma that faces many people inflicted with severest form of myalgic encephalomyelitis. One such person is Jennifer Brea. This is her story. This is her film. And it is one of the most powerful documentaries we’ve ever seen at the FFF. It’s incredible.

For a Monday night film, the Enzian was surprisingly full and there was a palatable buzz inside the theatre suggesting an anticipation for the film we are about to see.

I am surprised because the documentary, Unrest, is not the kind of film that normally generates such buzz. In fact, at the end of the film a member of the documentary selection committee will make a point to say the FFF usually does not show “Medical Docs.” But there was something about this movie that was attractive to them–something beyond the fact that the filmmaker, Jennifer Brea, was a local who graduated from Trinity Prep in Orlando.

Jennifer is a brilliant, Harvard educated woman who has traveled the world until one day she came down with a flu like virus. Suddenly, she found herself bed bound; often unable to sit, walk or even speak coherently. Confronted by a medical community that seemed too eager to insist her illness was, “all in your head,” Jennifer did what seemed most natural to an intelligent person in academia: she picked up a camera and started to compile as much data as she could about her condition.

It soon became obvious that she suffered from myalgic encephalomyelitis–A diagnosis that is often referred to by the name “chronic fatigue syndrome” although this name is considered a somewhat offensive description for such a debilitating illness that goes well beyond simple fatigue. According to the film, approximately 25% of people suffering from ME have symptoms so severe, they spend the majority of their time trapped in their bed. Even the slightest exertion can cause severe pain and exhaustion.

With no cure and very little research available, Jennifer managed to film her journey. Along the way, we are introduced to many others inflicted with this debilitating disease. The miracle of modern technology allows these patients who are bedridden to communicate with one another from their beds via the internet.

Together, this group and those that support and care for them, formed an organization called The #MillionsMissing. They explain that 20 million people worldwide are missing from their lives because of ME. In a powerful moment during the film, there are scenes from cities all over the world where the shoes from someone inflicted with ME are placed in prominent public spaces to represent those who could not be present to protest for themselves. And even when those with ME are able to attend a protest, they often need to lie down and/or endure a great amount of discomfort just from the effort of coming to the protest.

Perhaps nothing is more striking than the story of the Danish teenager who was forcibly removed from her parents’ home because the unenlightened doctor believed that the parents attentions to their daughter were the cause of her inability to rise from her bed. After many years being removed from her family with no visible improvement under the care of this physician (who has the aptly ironic name of Dr. Fink) the daughter was returned to her home after the government received many protests, testimonies and support from those who also deal with the ravages of ME.

At the end of the film, it was revealed that the number of patients with ME who commit suicide far outpaces those of the general population. And yet, the funding our country provides to those seeking  cure and treatment for ME is a minuscule fraction of the funding provided for many other maladies that affect far fewer people.

In a sad commentary of the inner workings of our society, the movie highlights speculation that funding and proper education for ME will never increase until drug manufacturers can figure out a way to monetize such treatment.

Perhaps the most powerful moment in the film was the revelation that Multiple Sclerosis used to be considered an “hysterical” and completely “psychosomatic” condition until the day that PET scans were invented and doctors were able to physically view the white plague on the brains of an MS patient. Even in our supposedly enlightened 21st century society, many people continue to consider ME something that is “all in your head” and caused by laziness, hypochondria or hysteria. The film has clips of famous comedians who would do routines about chronic fatigue syndrome describing it as the disease where a person wakes up and decides they just don’t want to go to work that day.

The resolve, the truth and the passion the documentary reveals about those inflicted with this dreadful disease is that, in fact, they want nothing more than the ability to get up and go to work.

Jennifer Brea, the main subject as well as the director, co-screenwriter and one of the producers of this excellent documentary was in attendance during the film and gave an insightful Q & A after the movie. It soon became evident that there were many people in attendance who have personal experience in dealing with this disease. A few shared their very moving stories.

Q & A with Jennifer Brea
Q: You obviously started taking a lot of movies of yourself, at what point did you realize, “I’m making a film.”

A: I’ve come to learn during this process that I was an artist without a medium. I was a writer for a long time. Then I lost the ability to write or read or think when this first happened to me. So I started recording these videos that you see in the film on my iphone. It was a way to process what I was going through and a way to understand and cope with that. It was really hard. It was really lonely. It was when I found that community online and I realized I wasn’t just battling with something alone; I was battling something that so many people go through–it was that and realizing just how little access I had to healthcare. I couldn’t go to a doctor or emergency room without the fear of being dismissed or abused and not being examined or taken seriously.  It was when I realized that larger social injustice at the heart of this that I wanted to make a film. I needed to believe the world was still humane and just. Simply the fact that nobody could see us; that people couldn’t see these stories, that we could bring them out into the light that things might change.

Q (From LA): At one point you say that people thought MS was hysterical until they invented the CAT scan and you saw the white spots. At another point in the movie you had someone who ran a woman through a bunch of tests and she came back and said because of this, this and this I can see you have ME. Does this mean we now have a diagnostic criteria or do we still have a ways to go on that?

JB: That’s a really perceptive question–and a complicated one.  There have been at least 6000 studies done. They’re not very widely read; but they’re there. There are a huge number of potential biomarkers. There are things we know that are consistently abnormal within patients with this condition: natural killer cell function, which is your body’s first line of defense against cancer and viral infections as well as all of these metabolic abnormalities that you find around energy metabolism. But the challenge is not only does it need to be abnormal in patients like me it has to be unique and it has to be cheap. A laboratory has to be able to find it and to scale it. I can go to a research lab and you can find all kinds of things that are abnormal with me. A general practitioner can spend all day running the tests he would run and he would never find anything. So there’s a gap between research and practice that’s really where the next step is. Researchers and clinicians need to find how to take what we know in the science and turn it into medical education and practical clinical care. They’re working on it. They’re working on cheap tests that could diagnose this accurately.

Q: Is part of this because it expresses itself mentally and may seem like confusion or depression? Are there mental symptoms?

JB: Well there are definitely mental symptoms and there are a lot of cognitive symptoms that are a core part of the disease. Some people are physically affected, some people are cognitively affected. At the beginning I was both. I could not lift my head off the pillow. I could not write more than a sentence of an email without passing out for an hour. It was because my brain would just hit a wall and I had a hard time with complex processing functions. I still do. I have a hard time filtering out sensory information. A lot of us look like kids with autism; we need to wear protective headgear and the light is hard and the stimulation is hard. Those are core features of the disease. In terms of depression, if you were someone who couldn’t go out or see friends or family or do anything that mattered to you for years I think that’s enough to make anybody sincerely depressed. I’m lucky. I never got depressed during this. It took an incredible amount of cognitive choice and daily stamina to stay alive. It’s really hard to live that way. It’s unimaginable to wake up every day in the same room and never know if you’re going to get out. For someone who’s mildly affected, they can run for a mile before they crash.

Q: I’ve been sick for 26 years [pauses in tears] I just want to reiterate the point that you made that the immunological studies–I had zero natural killer cells when I was tested and I had such a low CD4 count they told me I probably have aids. I wanted to mention that my apparent cause was a toxic mold environment when I was a teacher. Have there been a lot of people that you know who became ill after mold exposure?

JB: Yes, definitely. Thank you for sharing your story and for coming here. We don’t know what connects all of this. There’s many different triggers and you can have one trigger that causes many different diseases or many triggers that cause a common disease. I know that for a lot of people mold is a huge issue. I don’t know to what extent it caused my illness but I am extremely sensitive to mold. Some people have environmental exposures that cause this and some people have viral or bacterial infections that cause it. I had a friend that had chemotherapy for a brain tumor and it caused this. What happens to people who have their immune system compromised in this way is that you then have these other viruses that are in all of us and they start to reactivate and reek havoc and part of why I’m here today is because of drugs that a very small percentage of people have access to, including a new antiviral that if I didn’t have access to it within 48 hours I’d have been laid out permanently in that same place. My hope is that this will accelerate the research and give more people access to the kind of care that I’ve been so lucky to have.

Q (From LA): What is your goal? What would you like to see happen?

JB: I hope that people can recognize how serious the disease can be and get to know these patients that medicine and the outside world never see. The film focuses on the 25% of people that are home bound or bedridden. I really want for these patients that our communities and medical professionals recognize that we exist. It’s horrible that some of these citizens remain in the shadows and I’m hoping this helps to bring them to light and it starts to create real change.

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