We anxiously awaited the release of Netflix’s docuseries, “Afflicted,” on Aug. 10 and are appalled by the dismissive, psychosomatic lens through which the patients are ultimately portrayed.
The casting director had said that the “intention is to look at these experiences through a compassionate lens and give voice to those struggling for answers and acceptance.” We had hoped to see this reflected in the finished product. We are disappointed and outraged at the lens with which these illnesses were viewed.
First and foremost, we want to share our unwavering support and appreciation for Jamison Hill. It took enormous courage and self-sacrifice for him and all the other chronically ill subjects of the documentary to share their stories with us.
Secondly, we urge each of you to put your health first. Viewing the episodes might not be in your best interest depending on your situation.
As for how to respond, we have no one answer. As always, the strength of our community lies in its diversity. #MEAction exists to help strengthen your voices and help facilitate your ideas.
We have collected some ideas seen in the community and added some options we feel might be helpful.
1. Instead of sharing Afflicted, share the voice of people with ME and/or other illnesses portrayed in #Afflicted.
– Share Jamison’s own words in this New York Times article. https://www.nytimes.com/…/modern-love-means-never-having-to…
– Recommend viewing Unrest which can be seen on Netflix as well as many other streaming platforms. https://www.unrest.film/watch/
– Read Julie Rehmeyer’s book https://www.julierehmeyer.com/throughtheshadowlands/
– Watch Forgotten Plague https://www.amazon.com/Forgotten-Plague-Ron-Da…/…/B01AT28FS2
– Share any other medium that has moved you that features the person’s own voice
2. Make your opinion clear on IMDB and other review formats.
3. Write to Netflix https://media.netflix.com/en/contact-us
4. Use caution when sharing Afflicted which might inadvertently lead to increased views.
We will continue to explore all options and update you as soon as possible. #pwME #MyalgicE #chronicillness
Below is the interview that #MEAction conducted with Jamison prior to the release of “Afflicted.” Jamison is the author of the popular blog dealing with issues around ME, Jamison Writes.
What is the series about?
I believe it’s about people living with chronic illnesses like ME and Lyme, which are mysterious to a lot of people, especially those of us afflicted by them.
How did the producers find you / decide to include your story?
I think a friend in the M.E. community recommended that the casting producers check out my blog. That’s how they contacted me. Then I had to do two rounds of interviews via Skype. I was feeling much better then but the interviews were each over an hour and I remember thinking that if they asked for more I was going to throw in the towel. Luckily they liked my story and moved on to interview my family.
What was the filming process like?
It was pretty intense. Last summer the film crew came to my house three separate times. They also filmed my sister attending last year’s Stanford ME symposium. Otherwise I basically just went about my normal, albeit chaotic life, and the film crew tried to be invisible. Though that was pretty much impossible. At one point I found myself trying to eat with a camera literally on my chest. Another time I was bathing and one of the cameramen was right there filming beside me. Of course I consented to these things because I wanted my story to be told as accurately as possible, even if it meant sacrificing my privacy. Plus, having been filmed for Forgotten Plague, and other film projects, I wasn’t fazed by most of it.
What does the film mean for the community? What is its significance?
I think that remains to be seen. It could be huge — more awareness and research funding for ME. That’s my hope and ultimately why I agreed to do the project. But we’ll see, at the very least it’s going to get some people talking about illnesses that they know little or nothing about. I’m just not sure how many people or in what light.
Anything else you’d like to share?
I just want to make it clear that I was not paid to appear in the film, nor was my family. I think the film crew bought us lunch a couple times but otherwise we decided to give our time and energy to the project for free. I’m really grateful that my family was willing to do that because it wasn’t easy on them.