The power of telling our own stories

When I embarked on this project, it was with the belief that the stories we tell matter. 

A film is not a cure or a policy, but to paraphrase my husband who also shares this core belief, if we tell the wrong story about a problem, we can throw at it all the money we want and fail to make a difference. In fact, we might even make things worse.

So this is, at its core, about telling our own stories. 

I wanted to share with you some of the subtle ways the story is already starting to be reshaped:

A friend who is a scientist:


A friend in medical school:


And the word we are all using to name this disease:


I’m kicking myself that I didn’t grab it when I saw it, but someone even wrote that this was a film about “Myalgic Encephalomyelitis, formerly known as Chronic Fatigue Syndrome.

So, it got me thinking. Maybe it doesn’t take a formal proclamation by a committee to make this happen. Maybe it just takes us crafting our own message, and telling it louder than anyone else.

There were a lot of people who urged me, before we launched, not to use the combined name ME/*** term. I understood where they were coming from but didn’t really think I had a choice about stepping outside the box I’d been put into. The thing is, the words we use do matter because other people will repeat them. Because of the influence of a few of you whom I spoke to (and you know who you are!), the folks who don’t have our disease are getting to be introduced to it for the first time in a completely different way.

In fact, I’m starting to think that the fact that our disease is so unknown is actually a good thing. It means that if we can make it known in a really big way, all at once, we will completely overwhelm the small number of people who know only the half-truth with the large number of people who get the learn the whole truth for the first time.

Let’s try to make that happen together 

I have received so many stories in the last 48 hours. And photographs and video. Many of these stories are heartbreaking and I wish I could write back to everyone. But I read everything I am sent, and it got me thinking: we should try to share these stories, all in one place, as though we were talking not to each other, but to people who have never encountered our world before.

So please, use this Tumblr page as a place to share everything that you’re already sending. Tumblr is great because you can even post anonymously. You can post text. But you can also post photos and videos.

As we go forward, and if our campaign keeps growing at this pace, we can even direct journalists here. We’ll do everything we can on our Twitter account, Facebook page, and in our updates, to amplify and promote what you share.

Not just ME

I’ve decide to make this space about chronic illness in general. I know not everyone will agree with that, but I must tell you, so many of the people who are supporting this film are people who don’t have #ME but are an #MEAlly. They have another chronic illness or have someone close to them who has suffered greatly, and they can see in our stories their own stories. We don’t have a monopoly on pain or being mistreated by doctors for all the same reasons. So let me just say, are are welcome and embraced here.

A film is a story, not a cure. But I really do believe that if we can change the way that people think, it could be the beginning of something completely different for us.

Much love to you all,


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#myalgic encephalomyelitis
  1. inreecesopinion reblogged this from canaryfilm
  2. fdrukiddingme reblogged this from canaryfilm and added:
    We have the power to change the nightmare of ME with our words and our actions.
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