To watch Unrest please click here. If you want to know more about this project please keep reading.
Hi. My name is Anil van der Zee and I am from the Netherlands. I’m a former professional (ballet) dancer, but am now a predominantly-bedbound Myalgic Encephalomyelitis (ME) patient.
ME is a neuroimmune disease that, contrary to common misconceptions, is not characterised by chronic fatigue, but rather by a severe exacerbation of symptoms which manifest 24 to 72 hours after even minor physical or mental exertion. This hallmark characteristic of ME, known as Post-Exertional Malaise (PEM), can persist days, weeks or be the trigger for a relapse or deterioration.
Last year, I started an online campaign where my friends helped to raise awareness for ME through performance art. Artists from all disciplines gathered and, undoubtedly, many dancers participated. I felt that this undertaking was a great way to demonstrate the contrast between the lives of the 17 million patients worldwide suffering with a severe energy deficiency versus the lives of artists dancing, singing or pursuing any of their desires without having to worry about a dire PEM crash. A grand gesture made by them by expending their energy on this project in order for us to hopefully regain ours at some point again. This year, I wanted to do something similar but with a twist.
Since I started my blog in 2017 a lot of things have transpired. One of the biggest differences is that the disease has enjoyed a level of exposure much greater than historically seen. The main reason was a direct result of a documentary called Unrest. Unrest is directed by Jennifer Brea who was working on her PhD at Harvard when she gets a fever that leaves her bedridden. She turns her camera on herself and connects online with a hidden community of millions confined to their homes and bedrooms by ME.
Since the release of Unrest in 2017, it has received multiple awards and was even shortlisted in the top 15 films for documentary Oscar. Unrest has been shown on the American national television on PBS. It has been shown to parliament members in England and Scotland. There have been screenings worldwide at major institutions such as the Centers for Disease Control and Prevention and top universities like the University of California, Berkeley and Harvard University. In the Netherlands, the film has been well-received at Leiden University and Maastricht University. Interviews and reviews in leading newspapers. Interviews on television and radio. You name it. This never happened to this disease ever before.
Unrest is an exceptional piece of art. It is well-filmed and creates a captivating atmosphere that gives the viewer a unique perspective of the lives of patients with a severe form of ME that normally remains hidden from the public eye. It not only illustrates the distress of the patients, but also the struggles of the caregivers and the abuse and negligence surrounding this disease – a reality that many people are not really aware of and something that urgently needs to change. As such I wanted to help raise more awareness and get as many people to see the movie as possible.
The soundtrack of Unrest is composed by none other than Bear McCreary. He counts television series such as Battlestar Galactica, The Walking Dead and Outlander among his credits. I decided to use the music as inspiration for this year’s project. I asked my friends to pick a song from Unrest to which they could either dance, sing, or play. The task: record the performance and put it online in hopes of getting people to watch Unrest. Obviously it would be nice if people would help us out and do the same. So here’s how you can help.
- Pick a song from the soundtrack or If you prefer, feel free to use your own music or no music at all. Spotify, iTunes.
- Record your work/art
- Post it on social media.
- Include the following text with hashtags:
“Please watch the multi-award-winning documentary Unrest about Myalgic Encephalomyelitis (ME). ME is a debilitating neuroimmune disease affecting 17 million children and adults worldwide. ME is characterized by Post Exertional Malaise (PEM) – a severe worsening of symptoms that hits 24-72 hours after a minor exertion and can last for days, weeks or be a trigger for a relapse. Millions of people are missing from participation in daily life – 25% of them hidden away confined to darkened rooms. Millions of additional research dollars are missing to find treatment for this debilitating and neglected disease. Will you help us spread the word? Check out Unrest and let us know why you think it’s #timeforunrest
Name of music: Soundtrack Unrest.
Name of artists:
#art2cureME #millionsmissing #timeforunrest”
If you want to know more about ME, I urge you to read my blog from last year and check out some of the work my friends created or dedicated to raise more awareness for ME. The blog is available in: English, Nederlands, Deutsch, Français, Español, Italiano, 日本語