Some of my more devoted readers and friends may know that I was contacted quite awhile ago by Jennifer Brea, the woman behind the recently released documentary “Unrest,” about being in her film. If you haven’t read my more general review of this film and how it harms the very people it claims to represent, I highly suggest reading that post by clicking here before you go any further in this one. This is a personal recounting of my experiences with Jen and her film. I feel I have a bit of a unique perspective on this particular documentary, and that the community in general might benefit from knowing it. That said, here goes.

In July of 2014, I received a direct message on Twitter from Jennifer Brea. She’d heard some of my story, including the fact that I was receiving hospice care, and wondered if I might allow her to document that story in her film. Having noticed some of the early promotional materials she’d published using the terms ME and CFS interchangeably, I understandably had some concerns (if you don’t yet know how ME and CFS are two completely different diagnoses and why the terms should never be used together, please see this post on the subject). I expressed these concerns to Jen, who suggested a Skype conversation to go over them. She and I talked for quite awhile. 

Throughout our entire conversation, Jen assured me her views lined up with my own. She promised me that she understood ME and CFS as two entirely different entities that should not be combined or confused. She claimed to understand ME as a distinct, testable neurological disease, and CFS as representing a patient group with vastly varied fatigue-producing conditions. Jen explained that her views had been misrepresented in many of the early articles promoting the film, and that she had very little control over how the authors chose to write their articles. 

Jen promised me repeatedly in our initial Skype conversation, in followup emails, and later face to face, that her documentary would draw a clear line between ME and CFS. I explained repeatedly how important this was to me, and how I could not in good conscience support or be a part of any project confusing the two diagnoses. Jen told me she understood, and not to worry – my views were also her own, and her documentary would make them clear.

Having received these assurances, I agreed to participate in the film. At this time, I had received some concerning test results, and had been told the likelihood was high that I would die very soon – possibly within weeks. Understandably, Jen wanted this in her film. It would lend gravity to the topic at hand. She even asked, as politely as possible, if her team might be allowed to film at the funeral. This was understandably a difficult time for my family, but I wanted to do everything possible to help spread the facts about this disease. Jen had convinced me her film would be the first to truly do that, so I talked to my family and we agreed to give the film crew full access to whatever they wanted. 

In the documentary, Jen seems to imply that she did all of the interviews with other ME patients from her bed. She has given talks where a lot of emphasis was placed on the need to be creative due to Jen’s inability to interview people in person. Earlier today, Jen wrote a tweet that seems to indicate this is indeed the picture she’d like people to see. The tweet reads, “If I had not been bedridden when we were shooting the film, I may have been able to find more people through travel but I’m not sure that is the case.” In reality, while Jen was occasionally bedridden due to the exertion of making the film, she did travel for some of her interviews. 

In my case, Jen, Omar, and their film crew flew to my little Midwest town to interview me. They also interviewed my husband, my mom, my brother, an aunt and uncle who are often involved in my care, and even my doctor (whom Jen loved). During the interviews, my family and I shared our stories, bared our souls, and answered many questions. As part of those answers, all of us talked repeatedly about the differences between ME and CFS and how combining the two harms everyone. Jen never stopped us or implied in any way that she disagreed, much less that her film would reaffirm the very misconceptions we spoke out against. She simply kept filming, knowing how strongly each of us felt about this issue.

Skip forward several months. My health had stabilized a bit – I was, and am, still considered terminal, but the timeline was more up in the air again. I began to feel concerned about the various posts and interviews I’d seen Jen create. She routinely used the term “ME/CFS” and nearly always modified the term Myalgic Encephalomyelitis by adding something like, “better known as CFS” after it. In one post where someone questioned her on this issue, she actually said she felt people should be free to use whatever label they self-identify with most – a concept that would horrify anyone familiar with how medical conditions are diagnosed.

Eventually I contacted Jen to express my concerns, and to find out if she still planned on using my footage in her film. I had become extremely nervous that my story might be used to support a film that, far from helping people with this disease, would hurt us all. Jen wrote back to let me know she no longer planned to use my footage in the film, but might use it in later projects. She said she wanted to diversify the appearance of her film in terms of the people shown and their gender, location, and ethnicity in order to appeal to a broader audience. I replied to tell her I was not only okay with not being in the film, but relieved, as I did not feel okay supporting an “ME/CFS” film.

Skip forward to the film’s release. As promised, I am nowhere to be seen in the documentary. My husband, however, does appear. It’s only for about half a second 23 minutes in, but for some reason Jen chose to show a close up of my husband’s face. My husband is Asian, which brought to mind Jen’s talk of “diversifying” the appearance of her film. Maybe Jen chose to show his face because he’s Asian, and maybe not. Either way, she knew long before she began piecing together the final film that my husband and I no longer supported this project. The fact that Jen would use my husband’s appearance but none of his words in a film purporting to be about the disease he has dedicated his life to dealing with in his wife, one she knew he was strongly against and felt did his wife and others like me a lot of harm, doesn’t sit quite right with me. But all of this is relatively minor in comparison to the overall picture.

People who know what happened have asked me if I think Jen genuinely changed her views on this disease since she began filming, or if I think she lied to get me to agree to participate in her documentary. I’ve given it a lot of thought, and while I can’t say for certain, I believe the evidence leans heavily towards Jen intentionally deceiving me. The reason I say this is that even before she’d heard my story, Jen had a habit of combining the terms ME and CFS in nearly everything she did. That’s the reason I had such strong concerns in the first place. But anyone who’s met Jen will tell you she’s extremely charismatic. She’s the type of person who’s easy to like. The type you just want to trust. And we really bonded – she even talked at one point about how we felt like sisters or twins rather than just friends. 

Maybe I was naive to believe Jen when she told me she agreed with everything I shared with her on ME and CFS and felt as strongly about the issue of separating the terms as I did. Jen knew I’d never agree to participate in a documentary that used these terms incorrectly. She also believed (as did my entire medical team) that I would die before filming was completed. I believe she lied to me to get me to agree to be in her film so she could use my death to give added power to her narrative. And after I was gone, well, I wouldn’t be around to complain, and she had my permission both in writing and verbally recorded on camera stating she could use the footage she shot in any of her projects. I’m pretty sure that kind of behavior is despicable in anyone’s book. But it happened.

Words can’t express how incredibly grateful I am to have remained alive long enough for Jen to decide against using my story in her film. I feel like just that one act of helping make this documentary more powerful would have undone every bit of hard work I’ve put into spreading the facts about this disease. The very thought of it gives me chills – this was far too close a call. Technically, Jen still owns the footage she took of me and my family. She could still use it in a future project, and may be tempted to try to do so once my journey comes to an end. I hope she doesn’t, but if she does, don’t be fooled – I do not, I repeat, do not support the film “Unrest,” nor would I ever support any project that erroneously combines the terms ME and CFS. I feel very strongly that doing so hurts not only ME patients, but also CFS patients, and I’m not okay with that.

I felt I should share my story here as relates to this film because I’ve had people ask me what happened to me being part of the film, and also because I have a bit of a unique perspective. I also feel that since I once posted here about my involvement with this film, lending my support to the project, it’s only right I post an update clarifying that this support no longer exists (the original supportive post has been deleted, for obvious reasons). 

That said, my personal story is not what matters. It has absolutely nothing to do with why I am against this and any other film which erroneously combines the terms ME and CFS. Anyone who reads my earlier, pre-documentary posts on this blog will see my passion for getting the facts straight on this issue and for working towards a day when every single person with any health condition gets properly diagnosed. And that’s the important thing. Every person deserves a proper diagnosis. Nobody should be dumped in a general “fatigue” category, left there, and told that category is the same thing as a different, distinct disease process. And nobody living with a distinct disease should see all of the desperately needed advocacy and research dollars for their condition spent on things entirely unrelated to that disease. What hope is there for anyone if both these things continue?

Please help us spread the word about what ME is, as well as what it isn’t. With a film like Unrest spreading harmful misinformation with astonishing efficiency and speed, every voice counts. Whether you shout the truth or write it or merely whisper it – every voice counts. Thank you.