Over the past year, the #NotJustFatigue website, created by Elizabeth Ansell, releases a 10-part, documentary style, short form video series on different aspects involved in living with ME. Titles of the videos include topics such as: You Have No Idea How Serious This Is, Nobody Believes ME, and It’s Not Hysteria: It’s Sexism. In these videos you may even recognize some familiar faces from the #MEAction community.
We reached out to Elizabeth to discuss how this series came to be and the behind the scenes work that went into producing these videos. We hope you enjoy this interview.
You can watch all 10 videos here.
Questions:
1. What made you decide to do this project?
The disconnect between how much I was suffering and the lack of understanding and empathy from some people who were in my life was pretty astounding. I ultimately decided that education breeds understanding and understanding breeds empathy, and that video was a phenomenal way to educate the general public about the disease. I (conveniently) have a background in TV production and co-produced this project.
2.How long did this project take from start to finish?
It took about six years, but interestingly enough, it initially began as a short film. Things were not working in the edit, so I shelved the project for a while to work on other things. When I revisited the footage and interview transcripts sometime later, I immediately envisioned it as a short form video series and things began to take shape from there. It’s not uncommon for creative projects to morph and have many iterations.
3. How did you choose which aspects to feature in the series?
Each of the ten topics of the videos were chosen after the fact. We got such amazing interview footage while filming. It was only subsequently that I combed through hundreds of pages of interview transcripts trying to identify common themes and storylines. I wanted to highlight different aspects of what it’s like to live with the disease in a way that the general public could understand.
4. How did you choose who to feature in the videos?
I spent months and months casting this project, both scouting people online and conducting pre-interviews over the phone from my bed. Ultimately, I cast both experts and people with ME from all different backgrounds. We know that this disease affects people of all ages, races, genders, and socioeconomic groups. It was important to me to include diverse perspectives.
5. What is something you learned while making these short videos? (about ME that maybe you didn’t know or recognize before?)
I’m not sure if there is something about ME that I specifically learned while making this video series, but I was consistently struck by how heartbreaking and unbelievably moving people with ME’s stories were. If anything, giving people with ME a platform to tell their personal accounts has made this project well worth it.
6. How has been the reception from the public to this series?
The reception has been really wonderful! It’s certainly been rewarding to receive such positive accolades on this video series.
7. What is the #1 thing you hope people take away from watching this series?
In simplest terms, that this disease is #NotJustFatigue. ME is a complex neuroimmune, neuroinflammatory disease that not only impacts almost every part of the body, but also affects almost every part of one’s life. It can happen to anyone at any time. The US government needs to start listening to people with ME and dramatically increase their support, i.e. government funded clinical trials. There are too many doctors who still do not understand the disease, which is why having a resource like this publicly available is important.
