We are very excited to present our next “People in ME/CFS Research” spotlight this week, which is my interview with patient and advocate Jennifer Brea! Jen is a documentary filmmaker who directed Unrest, a film about her experience with ME/CFS, which has received  worldwide acclaim and brought much needed recognition to this disease. She also co-founded #MEAction, a global network for ME/CFS patients and their caregivers and doctors. Recently, Jen received ProHealth’s “2017 ME/CFS Patient Advocate of the Year” award. I was able to chat with her over the phone to learn more about her motivation for making Unrest, the response it has received, and her views of the ME/CFS field. Keep reading for the full interview! 

Hi Jen, thank you so much for meeting with me! We watched Unrest here at JAX, and it was absolutely incredible and so informative. It really makes you aware of what it’s like to have ME/CFS, and it’s become such a flagship for the disease and for advocacy. Did it have the effect that you expected, and what kind of feedback have you gotten from patients, the medical community, and researchers?

Hi Courtney! It’s funny, I think when I first decided to make the film, I just had a sense that there’s this gap – this horrible chasm between what everyone thinks this disease is and what it’s actually like to live with it. I would see that when I went to the doctor, or I was out in public, or talking to my friends, or I would see the media report on it. They were talking about a completely different experience than what I was living every day in my home, and that only my husband Omar and myself really observed. Even our friends and family didn’t understand the truth of what it’s like to live with this disease until they saw the film. I think it’s really hard to understand unless you live in the home and you’re either affected or you care for someone who is. So in the beginning, all I wanted to do was figure out how to close that gap, in part because I think I needed to believe that I still lived in a world that was kind and just, and capable of recognizing an epidemic and responding to it. I believe a part of why the misunderstanding that has happened was able to happen is because people couldn’t really see, understand, or grasp what this is really like, so that’s why I started making the film. And over the course of production, I had the chance to become more fully a part of the documentary film-making community, and we were supported very early on by Sundance and many other film organizations, so I got to see how other documentaries were able to tell a story really well and I could think strategically about how to grow a campaign around this story. And we – me, my team, and the community – worked really hard to achieve that.

In terms of what the reaction has been, in some sense it was expected, because I had seen the potential for that. I didn’t fully appreciate how much it would resonate with doctors, medical students, and researchers. That has been really exciting – that it’s not just the anthem for the patient community, but that it has become a way to get new people excited about this field and to at least make them aware that this world is out there that they may not have known about. So that has exceeded my expectations. The first year was really about launching the campaign in the film world – going to film festivals and bringing it to the public and having all this press. And this next year, and really the next 5 years, is about using it as a tool by bringing it into medical schools and research institutions and using it as a way to start talking about the disease, the patient needs, and all the exciting science that’s starting to happen. I’m looking forward to that.

And I think it’s made a big difference for the patient community. I have seen patients who for a long time were disbelieved, and some were not supported by the people around them – the people who love them. I’ve seen people heal those relationships as their loved ones come around and support them. I’ve seen caregivers feel for the first time like they are really seen in the film, and that has been powerful. And the media attention that’s been brought, and the way the film has become a tool for community organizing, through virtual screenings and in-person screenings – it’s really helped in cities all around the world to create a community. You go to see a film about a disease you have, where maybe you’ve never talked to another person with it, and suddenly you all show up in a theater or on a campus or community center, and you get to meet other people who were brought to the story, because it’s their story too. So it’s been thrilling to see how that has allowed the movement to grow. We’re doing around 100 public events now in cities all around the world, and I think a lot of that has been because the film has been a sort of Batman beacon or something – it’s become that light in the community.

So do you have plans for any future documentaries, about ME/CFS or something else entirely?

 I think I definitely will make more documentaries in the future, but I think that right now all of my efforts have been focused on the current film and our work that’s happening with MEAction. And that has been to accredit the film for Continuing Medical Education credit for doctors and to build a curriculum around it and expand and really grow the organization of MEAction to create a solid footing. So that’s really what I’ve been doing lately. But I definitely want to make more films!

Growing the organization is so important for visibility! In terms of the funding levels for this disease, do you have any plans to increase funding and for establishing that this is a real condition that deserves attention, like with the Millions Missing protests?  

I think that the funding issue will be a core part of the campaign in the US and I want to use it as an opportunity to reach out to Francis Collins and really say, “you need to take us more seriously and give this disease more money.” But it also means investing in and doing outreach across all of the programs that are available at NIH. Obviously there are mechanisms for putting a lot of money into an urgent issue, and frankly this issue has been urgent for 30 years. It’s an issue that’s more on par with massive preservation or climate change, which is another issue that’s really important but hard to attract attention to when everybody thinks, “well, we’ll just deal with the tsunami tomorrow.” But the reality is that the loss of life, and not just in life-years but in actual death, have been far more than everybody can see or understand or imagine. So we’re trying to step up the urgency and help him understand the magnitude of this. I can’t believe that he understands the magnitude because the response has not been proportionate to the scale of the issue, which is absolutely as much of a crisis as other diseases that they have responded to. So, the Millions Missing protests will keep happening, and we’re definitely going to do other actions to support that message.

And I think the other side of it is really trying to grow scientific interest and increase the number of grant applications and the numbers of researchers in the field. We’ve been thinking about a lot of ways to do this, and there are a lot of research organizations that are working on that in different ways, but I think our contribution really is about the education and the outreach, and a part of what has been really remarkable to see is all of the passion from young people. We did a screening at Princeton a couple of weeks ago, which is my alma mater. I think for people who are far along in their careers, they tend to already have something that they’re passionate about and they’ve been working on for many, many years. But I met a student at Princeton who’s pre-neuroscience and thinking about getting her PhD. And she started watching all of these ME/CFS documentaries and getting really passionate about it, and she doesn’t even have a personal connection to the disease. So we were able to connect her with some people. And at Harvard, there were some medical students who saw the film and got really jazzed about it. So we’re really going to be focusing on students at the undergraduate and graduate levels, and trying to generate interest and then generate pipelines for people as they go on to do graduate and post-graduate work. So these are the people we really want to focus on, in addition to trying to get people who are already doing related research who may not even realize that they are, to start coming to our conferences and start to network. It’s just another form of community organizing to find students and scientists in related fields and connecting them to people who are already doing this work.

What a great idea to try to reach out students and recruit them into this field! So at JAX, we have started working with MEAction to connect to the community as well. We have started a blog where in addition to interviews like this, we post educational material and ME/CFS science news. In your opinion, do you think this is an effective way to communicate with the community, and what else can we as researchers do to improve communication?

So I think patients in our community tend to be far more empowered and literate about medicine and science than most patients, and it’s because we have to be, but I actually think it’s a great strength because I think all patients should be that way about their own conditions. It’s so important to understand your own medical care and I think patients have a lot they could benefit from by understanding more about the science, and also because they would have more to contribute. And that doesn’t happen with most conditions, where the expectation is you go to the doctor, and you get a diagnosis, and you get a pill. But behind that pill is so much more! Questions, debates, methods, and different paradigms. I think it’s important to have that communication and that back-and-forth, so I think it’s great you guys are doing that.

One of the things we’ve been trying to do for a long time, is that we really only have about 7 volunteers who manage the MEpedia website. So it needs a lot of work, and our hope is that, no matter how technical a page is, the first opening paragraph is summarized in a way where anybody can understand it regardless of what their background is, and then have the majority of the page be where maybe a college undergrad can understand it. But the problem is that when you have pages that are more technical where you’re talking about certain receptors or something, it can be hard, because we want it to be a bridge for patients but we also want it to be an on-ramp for researchers. You can spend a lot of time just searching PubMed to figure out the breadth of research that’s happening in the field, but there’s also a lot of research happening outside the field that could also be related. So to make that link between ME/CFS and findings in another disease, you may need to be searching for articles in other conditions, and maybe you’re not somebody who specializes in a certain area so you may not even know this is an avenue you should go down. So we’re hoping we can have short literature reviews that are organized by topic that will help people see laterally much faster and see what’s being published on a specific thing in other fields. So we’re trying to bring people in who can do this. I think it’s really useful because I would be reading something and then I would forget where I saw it, so if I found something I thought was interesting, I would just write something quickly about the study on MEpedia so I could go to the page later and find it. It became kind of an external prosthetic brain in a way. So making sure you’re effectively communicating the science in a way that’s understandable is definitely really important.

Yes, science communication is so important. So, our center here at Jackson Labs is hoping to develop an online collection of data from patients with symptoms, lifestyle information, etc. as an app or other web-based software. Do you think this would be useful to patients? Can we interface with #MEAction to promote this?

 I think that would be incredibly helpful. One thing to think about is that most of the ways that we can self-monitor information has been too complicated. There are tons of questions and things you have to fill in, and it’s hard to do something every day when it’s really complex. If it’s something like a heart monitor or an odometer, that makes it easy because you can participate without even really having to do anything. Then if you are tracking just a few symptoms and other things, making sure it’s simple would make it really easy for patients to use, and something like an app would be wonderful. So I’m really excited about that, and #MEAction will definitely support it in any way that we can.

Great! I know that patients can have a lot of difficulty in terms of finding good physicians who believe in ME/CFS and are good at treating it. In your opinion, how can we as researchers influence the medical community so that it’s easier for patients to find treatment?

So what we’re doing is building a global registry of doctors who are specialists. So we want to have doctors who are experts, but we also want to have doctors who have maybe done our CME or otherwise are an ally but are not experts. That way the registry can be big enough that anybody, no matter where they live, can find a doctor. So they can find doctors who may not necessarily have expertise in this, but they have been trained in how to diagnose it and understand the basic principles. So at the very least, you can go get a diagnosis and talk to somebody who has an understanding of this disease, and is compassionate and is an educated partner in your care. So then the important thing really is trying to do that outreach and medical education piece, which is a large part of what we’re doing right now around the Unrest screenings. There are also online screenings where doctors can watch the film, watch a 10 minute video about diagnosis and management, and then get a continuing education credit.

In terms of what researchers can do, I think clinicians just want to know how they can help their patients. Especially for those that are not doing clinical research, I think that’s where the communication is really important, and to keep doing that. Making sure that the science communication around your work and other researchers’ work is accessible, and making sure clinicians are hearing about it, is something that’s really needed. We need to have something published in a place that a lot of doctors read, because that would be an incredible thing. It helps them to approach the disease in a more effective way if they know about it and have some ideas about how to diagnose and treat it because they’ve read about it somewhere. We’re also going to start doing a quarterly newsletter for clinicians and researchers, with the research that has happened in the last three months plus funding opportunities. I think it’s really about making sure that people are aware of what’s happening and what’s going on in the field. Then we don’t have to wait 10 years for the translation to care to happen, since people can be following what’s happening as it happens.

The newsletter is a really good idea! Is there any research going on right now that makes you feel hopeful?

There isn’t really any specific research I’m excited about. I am hopeful because there are so many labs in the field and there’s a scientific conversation that has happened between all of these groups and in these collaborations all over the world that has never happened before. In the past, even if someone found something exciting, it wasn’t going to be replicated because there wasn’t another lab that was doing the same thing. The field wasn’t to a size where findings could be replicated, and you need to have that conversation happening through publication and through collaboration in order to actually make progress and have that translated into care. It’s really heartbreaking to look at all the studies that have been happening for 30 years, and some of them actually found something really interesting and promising, but then nothing ever happened with it. So what’s different now, is when we find something, something can happen. Since the field is bigger now, and there are different groups in different countries, people can network and are able to make the progress and have findings that are definite. So I’m really excited about that, and that gives me hope. It’s not about one study or specific research, it’s about the accumulation of knowledge, and that’s starting to happen. And so the task at hand is to bring even more people into the field and to make sure that all the researchers have the money they need so that we can move the field forward quickly. So that’s what I’m trying to do, and trying to figure out how to fight for funding. I’m most excited by the possibility that all these people with different approaches could start to find things that actually connect to each other, and then the picture can form. And I feel like there’s starting to be a picture forming, and I think that’s exciting and I’m looking forward to the day that that can happen. I think things have never been as hopeful as they are right now in this moment!

It definitely is a time filled with a lot of hope. Thanks so much for talking with me, Jen!