Sunday, October 9, 2011

Movies, Rock Stars, Attention

Quite often we find that when an audience sees a film, they’re inspired to do something. So active cinema is trying to connect the dots between the experience of the story of the film, and people who say, “Well, what can I do?”
Zoe Elton
Director of Programming
Mill Valley Film Festival
(In an interview with KALW News)

With that in mind, Elton included in the Mill Valley Film Festival a British documentary about Myalgic Encephalomyelitis: Voices from the Shadows. It had its world premiere at the festival, yesterday. I hoped until the last minute that I might be able to attend, but I was too sick with Myalgic Encephalomyelitis and besides I didn't want to leave my daughter, who is sicker still.

Fortunately, those who missed the festival, and folks like my housebound self and my bedridden daughter, can see the movie throughout this month (Oct 2011), although only in the US and Canada because of licensing stuff, right here:

Wherever you are, you can watch the trailer here:

The trailer only begins to convey the impact of the film, which only begins to convey the suffering of millions of patients worldwide and the ineptitude of what passes for medical care. Think Snake Pit. It's a horror story that screams for action. "So we really want to see if a film can help make a difference. And that’s why we’re showing this film," said Elton.


Elton wanted to increase the possibility of translating Impact to Action. "So we decided to work with the filmmaker to show the film and to do a panel about the issues in the film. So we’re going to have a panel that’s including Dr. Jose Montoya from Stanford, who is kind of like a rockstar doctor in this area."

It's true; Montoya has a devoted worldwide following in the area of M.E.. I don't know if Wellies know about him, but to us Sickies he's a big name draw.  (Thanks to my friend Lise for the term Welly.) The Wellies don't know about so many things in our shadow world.

What does it take for whispers from the Sickies in the shadows to be heard---to be acted upon---in the bright and busy land of the Wellies? Does it take a harrowing story of medical abuse, the cries of a young woman being dragged from her home to the hospital that will precipitate her death? Does it take a big name researcher like Montoya? Or would a real rock star help?

Stevie Nicks? Flea? Keith Jarrett? Cher? Randy Newman? All of these have been diagnosed with something like ME under one name or another. However (or perhaps therefor) none of them has had any energy to give to the cause of raising awareness to fund research and discover real treatments. Director Blake Edwards (Pink Panther films, Breakfast at Tiffany's), also a Sickie, tried having a fundraising party and Hollywood gave him the cold shoulder. Perhaps his widow, actor and singer Julie Andrews, could raise her voice in our cause, and be heard.


We just want attention. The same way AIDS patients just wanted attention in the 1980s. Only we've gone on wanting for decades. While Polio has been determined not to be hysterical, while AIDS victims are no longer dismissed as being punished by God, while MS has advances from being mistreated as a form of madness to scientific study as a neurological disease, meanwhile ME, also classified as a neurological disease by the WHO, still is not treated with medical care but punished with abuse and neglect.

We don't just want attention, we need attention. Funding attention and medical attention and patient services. Four of us died in the last two weeks. One was only 18 years old. 

What motivates you, Wellies? Do you need a rousing song, a pithy slogan, an eye-catching logo? We Sickies have tried raising awareness with all of these things and more, from our homes and beds, scooters and wheelchairs. 

If you see the latest documentary, if you hear the Voices from the Shadows and they speak to your heart, what more will it take to make you phone or email your elected officials and demand that they fund research? How does Impact transform into Action? Please don't wait, as I did, until you and your children are ill.

I'd be delighted to have some dialogue in the comments. What causes have moved you to action? How?

EDIT: UPDATE 18 November
Voices from the Shadows filmmakers have posted info on their Facebook page re: a London showing 7 December, with panel discussion to follow. They said:

Please could you pass this info on to people you know who may be interested in watching the new award winning film - 'Voices from the Shadows' - Dec 7th in London, hosted by IiME with a discussion following, at the British Library.

More information about the film can be found on the film website

Nigel Speight is the guest speaker for the discussion panel.

A trailer for 'Voices from the Shadows' is at

It sold out at the prestigious Mill Valley Film Festival in California Oct. 2011 and was Favourite International Documentary Award winner

"the most important and significant film on paediatric ME that has ever been produced "– Prof. Leonard Jason

"there is no way that my written words can do justice to this powerful movie and I urge everyone who feels up to it to watch the movie." 'thoughts about ME' blog

"There has never been a film like this, and there is apt not to be one again in the near future. "Voices from the Shadows” is a labor of love. It strikes from the heart – to the heart. Everyone who has an interest in this illness should see this film – from beginning to end." Prof Chris Cairns, 'Patient Advocate'

If you would like to watch this film hosted by Invest in ME in London - act now - tickets now reduced to £7 - must be bought well in advance from -

Thank you for your help with publicising the IiME screening of our film. Natalie and Josh.


  1. ha - you've taken up 'wellies' too! (my brain wasn't working enough to figure out the corresponding word...think you got it with 'sickies' makes much more sense than all the versions i used in my post). love the 'rockstar doctor' and wish we could see this here.

    well done with the post. sorry you weren't able to make it to the screening. XXOO

  2. Yes, kp, when Lise said "wellies," I knew that was a keeper.

    Your blog is lovely. Folks, read kp here:

    I think kp's blog, mine, and our friend Lee Lee's all dovetail this time around. From our far corners of the earth we reach out to the wellies. Lee Lee's is here:

  3. ooh would love to be able to see the movie,not available here is australia ...

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  5. I didn't think about being thin because I just always was.