Anil van der Zee, 38, is a former professional ballet dancer in Amsterdam. In 2007, he contracted a viral infection, Cytomegalovirus, and never fully recovered. A few years later he was diagnosed with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).
He describes his transition from being a strong, vibrant dancer to a man hidden in the darkness, unable to handle any exertion, isolated from the world for more than a year, forced to live in the bathroom and closet because the stimulation from living in an old house was too much for him. Today, Anil is almost completely bedbound from ME. And yet, since ME is not recognized as a biomedical illness in the Netherlands, Anil was unable to receive any assistance from the Dutch government.
Creating art is what makes Anil feel alive, and, since he can’t create “movement” any more with his own body, he has reached out to his friends who are dancers, choreographers, singers, pianists, architects, cartoonists, writers, photographers, filmmakers, DJ’s to create a piece of art to raise awareness for ME for the month of May. He plans to share the art he has received beginning May 1st with the hashtags #undauerME, #art2cureME and #millionsmissing.
He is also inviting anyone with ME and allies to participate in the project, and to share their expressions of art beginning May 1st with the hashtags #undauerME, #art2cureME and #millionsmissing. Anil envisions that raising awareness for ME through art will continue long past May, however, until the day that a cure is available to people with ME.
Participate in the project:
- Go out there and dance, choreograph, sing, act, draw, play, photograph. Whatever you feel comfortable doing. In your living room, studio, theatre or even better in the street. Maybe you have some older work you want to dedicate to the cause; create a small piece or dedicate a whole evening.
- Share you art on social media (Facebook, Twitter, Instagram) using the hashtags #undauerME #art2cureME (also #millionsmissing #pwme #mecfs) on May 1st. *Include the text below with your social media post.
- Ask /invite a few friends to do the same.
- Like the Facebook page for #undauerME #art2cureME
- Donate to one or all of these amazing groups of researchers to help find a cure.
- Please sign this petition asking the Dutch Health Council Committee to recognize ME as a chronic, complex, multisystem disease. The petition can be signed by everyone. You do not need to be a resident of the Netherlands to sign.
- Learn more about Anil and at his project, #art2cureME, at his website.
Include this text with your social media post:
* I’m raising awareness for Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome (CFS) through (performance) art. ME is a debilitating, neuroimmune disease affecting 17 million children & adults worldwide.
The name CFS wrongly suggests that this illness is all about chronic fatigue or rather chronic exhaustion. But exhaustion is just one of the several disabling symptoms. The hallmark of this disease is Post Exertional Malaise (PEM), which is a severe worsening of symptoms that hits 24-72 hours after a minor exertion that can last for days, weeks or be a trigger for a relapse. You don’t just feel fatigued, you feel extremely ill.
For too long this disease has been hijacked by psychiatry because of the fatigue label but these theories/ hypothesis are slowly starting to crumble due to the fact that biomedical research is catching up. Unfortunately research is going slowy as it mostly relies on crowdfunding with a lack of federal funding globally. So we urgently need your help. Want to know how? Click on this link for more information: http://anilvanderzee.com/undauer-eng/
