• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

NETHERLANDS: ARTISTS TO SHOWCASE THEIR WORK TO RAISE AWARENESS FOR ME

Messages
2,391
Location
UK
I don't think this has been posted elsewhere on PR.
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 a year, forced to live in the bathroom and closet because the stimulation from living in an old house was too much for him. 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. It is difficult for Anil to get down the stairs now, and he is largely homebound by the illness.

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 on 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 on May 1st with the hashtags #undauerME, #art2cureME and #millionsmissing.

...

http://www.meaction.net/2017/04/25/...howcase-their-work-to-raise-awareness-for-me/
 

Helen

Senior Member
Messages
2,243
Amazing initiative.

It´s possible to sign a petition although you aren´t Dutch aside the awareness action May, 1st, but it was hard to fill in the boxes as the text with instructions is in Dutch. Maybe someone could ask for an English version too?
 
Last edited:
Messages
77
Anil van der Zee, a Dutch ME patient with Severe ME, and a former prof dancer, has created a beautiful ME Awareness project. You can watch him dance here before he got sick:

Anil has asked friends, former colleagues and fellow artists to help raise awareness! And they are !! See for example this moving video from a former dancer and friend of Anil

She says: Inspiration for this video was the thought: What would I miss about my live if I was very sick, isolated and alone.The people I love, places I go to, music and dance.Some parts I dance without music to emphasise the loneliness in silence.

https://www.facebook.com/mendy.deboerkunz/videos/1328328330583573/

Anil asks people to join his ME Awareness movement. What can you do?

1. He asks everyone to sign the Dutch petition and share it so that we can be heard https://meisgeensolk.petities.nl/?locale=en
Guys we need 2700 more signatures to reach 10,000, please sign and share !!

2. Watch all the moving video's and creative projects from Anil's friends that are raising awareness for ME on the special FB page: https://www.facebook.com/undauerMEArt2cureME/?fref=ts

3. Join !! read here how: http://anilvanderzee.com/undauer-eng/