Once Dismissed And Hidden, Chronic Fatigue Patients Speak Up

IRA FLATOW: This is Science Friday. I’m Ira Flatow.

At the age of 28, Jennifer Brea was active, energetic, and pursuing her PhD– then a fever and a mysterious host of symptoms that eventually left her unable to get out of bed. Medical professionals had a variety of diagnoses from dehydration to the equivalent of an it’s all in your head. So she started filming herself and her symptoms in the hopes of a more meaningful diagnosis.

JENNIFER BREA: I don’t know what I did to myself. I don’t think I can get up off the couch. I feel like my brain is misfiring. Sometimes I wouldn’t be able to speak. W-w-w-wow. The doctor would tell me you’re just dehydrated– everyone gets stressed.

IRA FLATOW: Eventually, she figured out she had something– something called ME, myalgic encephalomyelitis, or chronic fatigue syndrome, as it used to be called. And she turned her film project into a full documentary, called Unrest. It’s about her life and also millions of other people with the same symptoms and lack of answers. She’s here with us today. Welcome Jennifer Brea.

JENNIFER BREA: Hi Ira.

IRA FLATOW: You talk about how millions of people are– they’re unnoticed, because they’re all sick in bed all the time.

JENNIFER BREA: Yeah, so one of the things about this disease is that it’s so deceptive. 25% of us are homebound or bedridden. And those of us who aren’t trapped in our homes, you only see us when we feel well. You only see us when we’re well enough to be out in public, and so you don’t get to see what we live inside of our homes and bedrooms when we’re “crashed” from the disease.

IRA FLATOW: Now most of us have heard of chronic fatigue syndrome. Where does ME come in– myalgic encephalomyelitis?

JENNIFER BREA: So that’s a really interesting question– it was this original name for the disease, and that came out of an outbreak that happened in London, at a hospital, in the 1950s. And they noticed that patients had– many of them had muscle pain, which is where the myalgia comes from–

IRA FLATOW: Mm-hmm.

JENNIFER BREA: –and encephalomyelitis, which means inflammation of the brain and spinal cord. And the disease was known to the medical community. But after an outbreak in the United States in the 1980s, in Incline Village, Nevada, there was this reframe of the disease, where people started to think that it was yuppie flu or perhaps a case of mass hysteria. And it was out of that time period that the name chronic fatigue syndrome came to be used, and today it’s more commonly referred to as ME or ME/CFS.

IRA FLATOW: Mm-hmm. What I’ve also found interesting in your journey is how you discovered how many millions more people were in bed like you were.

JENNIFER BREA: Well, I definitely didn’t discover that, per se, but I was surprised. I was shocked to find that out, because I never heard of this disease before I got sick myself. And, as I was trying to find a diagnosis, I started to go online– like so many patients do when they have a hard time getting answers– and found that there really were thousands upon thousands of people on social media who were sharing their stories and many of whom had been sick for decades.

IRA FLATOW: Mm-hmm. And how does the CDC, the Centers for Disease Control and Prevention, treat it now? What do they call it?

JENNIFER BREA: So, there’s no FDA-approved treatments– and so most patients have to spend a lot of time wandering in the wilderness, trying different treatments, going to doctors and to the handful of experts in the country– and there are off-label drugs that do work. But one of the things that’s really key to mention is that for a long time it was thought that the standard treatments for this disease were cognitive behavioral therapy and something called graded exercise. And very recently, just in the last few weeks, the CDC has changed its recommendations and said, actually, not only is exercise probably not effective in treating this disease but that it can actually be harmful for many patients and make their disease worse.

And, so, the exercise idea was something that came out of a faulty study, called the PACE trial, in the United Kingdom– and that sort of science is crumbling. And this is really good news for patients because, even though we don’t have really effective treatments for the disease, it’s possible that a lot of disability could be prevented if we could diagnose patients early and help them manage their symptoms by actually staying within their limits and not encouraging them to exercise and go beyond them. So, for a long time, the standard treatment was essentially like advising a diabetic to eat sugar, and that’s really what exercise is for us. And, so, I’m really grateful that the CDC has updated those recommendations.

IRA FLATOW: Tell us what it was like to turn to doctors for help and get no answers– like, oh it’s all in your head.

JENNIFER BREA: I think the thing that was hard for me is that I was studying in a PhD program– I was getting a masters in statistics– and, in that more academic science side, we’re really used to dealing with ambiguity and uncertainty and, I think, understand how hard it is to know anything about the world. And, as I was traveling across campus at Harvard and into the clinic, I was being told this is the answer. And the challenge was that if I saw 10 doctors I got 10 different equally certain answers. And frequently I felt like they weren’t listening to the symptoms that I was observing and really, in some ways, valuing the empirics– right, the empirical evidence that every patient brings. And, I think, I was surprised because patients– we don’t have the medical training, but we are experts in our own bodies– and I think the observations that we bring are really important to doctors in terms of understanding what it is that we’re experiencing and what might be causing it.

IRA FLATOW: But you were forced to take things into your own hands, try different things that you show in the film, Unrest– how many thousands of bottles, it looks like, are littering–

JENNIFER BREA: Oh gosh.

IRA FLATOW: Yeah. Is this the common thing for ME patients to do on their own– they have to do this on their own?

JENNIFER BREA: I mean the challenge is that there’s probably only about 10 doctors in the country who are expert in treating the disease. So, when you get diagnosed, if you get diagnosed– and it takes an average of five years to find a diagnosis because doctors are not trained in medical school how to diagnose the condition– you generally– most patients don’t have access to the specialists. Frequently, we have to fly and travel out of state, and most patients are too sick to even be able to do that, let alone afford to pay for that kind of care. And, so, we’re left wandering in the wilderness, hearing anecdotes online, trying different things.

I have made many impulse buys on Amazon after hearing a supplement worked for someone. And I think it’s just because when you’re that sick that you’re trying everything you can to get better– and so you will try everything you hear and you will experiment. I’ve probably tried 200 different treatments, and it’s been worth the wandering, because I have found things that have worked for me and have helped me live a much higher quality of life. But what we really need is science, and we need science that we can understand which treatments help people and how to match which patients to which treatments.

IRA FLATOW: Mm-hmm. And how much money is the government or NIH spending on research?

JENNIFER BREA: So, historically, they’ve spent about five to $6 million a year, which is really devastating, because when you look at how common this disease is– so it affects over a million people in the United States, which makes it more than twice as common as multiple sclerosis– and when you look at how devastating the disease is, in terms of the average level of disability, it’s like 75% of patients can’t work, 25% homebound or bedridden.

Parity with a disease like tuberculosis or MS would be about $250 million a year of funding. So, from five to six to 250 is a huge, huge gap, especially after so many decades of neglect. Now the funding has increased slightly this year to $13 million with an establishment of these new centers of excellence, which are going to be spaces of research and clinical care– which is really exciting, except that it is far too slow and far too little.

I want to be well while I’m still young. And, I think, we’re going to need at least 10 times that amount to develop a research field of a size where we can actually have large-scale studies and replicate the evidence that we find. So, unfortunately, I don’t think the NIH is really serious about finding out what’s causing this at the speed at which patients need it to save our lives.

IRA FLATOW: So you’ve been forced to come up with demonstrations and protests of your own– you document the millions missing in your film. Is there another one scheduled?

JENNIFER BREA: Yeah, so we’re going to be– essentially, we’re using the film as a tool to organize, and so we’re bringing it to communities and we are forming– really trying to grow that base of support in community and collaboration among patients and allies and caregivers. We are going to do everything that it takes to bring that awareness and put the pressure on the government.

The challenge is that every time we go out and we try to protest, we crash. We exceed our metabolic limit. So this is a disease that affects your energy production, and patients have a hard time metabolizing glucose– and, basically, it means that I have a limited bandwidth–

IRA FLATOW: Yeah.

JENNIFER BREA: –in which to use my energy, and there are patients who came out last year to our protest in September who, a full year later, are not as well as they were the day before they went out. So, we need allies and we need to get the word out, and so that’s what I hope we can do with Unrest.

IRA FLATOW: Do you have another protest scheduled?

JENNIFER BREA: In May, yes. In May, we had 25 cities around the world people came out to protest and to rally and so, hopefully, this time around in May it’ll be even more.

IRA FLATOW: Mm-hmm. Well, people can view a little bit of the film on our website at sciencefriday.com/unrest. It’s an incredibly brave film, and it’s very touching and a powerful film. And thank you for informing all of us about it, Jennifer.

JENNIFER BREA: Thank you so much for having me here.

IRA FLATOW: Yeah. Jennifer Brea, director of Unrest, in Los Angeles, talking to us from LA– and the film is in select theaters across the country.

Copyright © 2017 Science Friday Initiative. All rights reserved. Science Friday transcripts are produced on a tight deadline by 3Play Media. Fidelity to the original aired/published audio or video file might vary, and text might be updated or amended in the future. For the authoritative record of Science Friday’s programming, please visit the original aired/published recording. For terms of use and more information, visit our policies pages at http://www.sciencefriday.com/about/policies/