Go Big or Go Home


This is Jen Brea after a 12 hour photo shoot for her film, Canary In A Coal Mine. I chose this picture of Jen because I’ve felt that way too. Every ME/CFS patients has felt this way: unable to stand, to lift your head off the floor, to speak. The triggers are different. Some patients might fall into that place after cooking a meal or driving the kids to school or using the computer for a few hours. It’s different for all of us. But we share this common experience that cannot be conveyed by such an inadequate word as “illness,” and that’s why the Canary film is important.

News of the film has spread quickly in the ME/CFS community: a Harvard PhD student disabled by ME/CFS is documenting her experience and the story of this disease through a narrative documentary film. And in my opinion, that is one of the strengths of the project: the storytelling. The visuals from this film are beautiful, and showcase the talents of Kiran Chitanvis. But through all the videos and blog posts, I think it is the story that draws us in.

Brea and Chitanvis created a Kickstarter campaign for the film. The original goal was to raise $50,000 in 30 days – just a quarter of the film’s $200,000 budget. There are a number of factors that define a “good” Kickstarter campaign: materials that show the project will be done professionally; excellent rewards; and publicity beyond Kickstarter that brings new people to the campaign. Brea is doing it all. The videos, stills, website  and narrative released so far are very professionally done. The rewards are great, including behind the scenes access, tickets to the premiere, time with Howard Bloom, or a one-hour shoot of your own story. And through connections and an unbelievable amount of promotional work, the publicity has been greater than I’ve seen for any other ME/CFS creative project.

In just over three days, the $50,000 Kickstarter goal was met. Brea and Chitanvis decided to go big: they stretched the goal to the $200,000 needed for the film AND set a new goal of getting 6,509 people to fund it, which would make it the Kickstarted documentary with the most backers. As of today, with twenty-two days to go, they’ve raised $91,381 from 969 backers.

The attention paid to publicity is really significant. The film’s story has been covered by ABC News and on the TED blog, and many other outlets. In my opinion, this sets Canary apart from other projects. The patient community can’t fund this project by ourselves. In order to truly tell our story to the people who need to hear it – the people who know nothing (or nothing good) about ME/CFS – the film has to reach beyond the ME/CFS community. Brea and Chitvanis are doing that from the start, and support for the Kickstarter from outside our community will help the film ultimately reach that outside audience as well.

And this brings us back to storytelling. What makes people want to support this film is the intimate connection with Brea and others featured in it. It’s the story that pulls you in, and the story that makes you want to do something to help. If that’s true of the Kickstarter, it can be true of the film. And that could be a defining moment. We’ve longed for and dreamed of widespread public attention to the realities of having ME/CFS. Canary In A Coal Mine could deliver.

The film comes at a critical moment in ME/CFS history. Production will begin early next year, and the target completion date is December 2015. Simultaneously, the advocacy community is laboring to make progress across multiple political and scientific fronts. Most notably, the Institute of Medicine is scheduled to release their new clinical case definition of ME/CFS in March of 2015. I would like to believe that the galvanization of our movement is at hand: that our story will be HEARD and SEEN. I would like to believe that change is coming.

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13 Responses to Go Big or Go Home

  1. Ess says:

    A couple of days ago I logged onto the preview of Canary in a Coal Mine–and am grateful that you have brought this front and centre for us to take a look at, Jennie. Once again, thank you!

    You’ve also helped to explain to us the criticality of the date of the release of the film; I don’t even want to mention the name of the IOM (Institute of Medicine) releasing ‘their’ new clinical case definition of ME/CFS.

    The collective ‘we’ with ME/CFS are always donating to charities for others–let’s donate to ‘US’ — GLOBAL ME/CFS AWARENESS in seeing the success of Canary in a Coal Mine brought to fruition.

    Jen Brea–amazing–thank you for the vision you have in making this film and telling ‘our’ ‘living’ story with ME/CFS!!

  2. Maureen MacQuarrie says:

    Thanks Jennie — As always, your analysis and insights help so many of us understand the significance of events in the ME/CFS world. Don’t know how you do it, but so glad you do. (I’ve read “Pedal to the Metal” and know it isn’t without cost.) Wishing Jen Brea and Kiran Chitvanis all the best … I’m with you, Canary in a Coal Mine does have great potential. We know how sick we are but despite valiant efforts by many, many people, just haven’t been able to get that message out. As you say, reaching beyond the ME/CFS community is one of the keys.

  3. Ess says:

    Seeing the above time-line release date of March 2015 for the IOM new clinical case definition for ME/CFS–realllly brings home that even more than a waste of money–this regressive exercise of hiring the IOM–is an atrocious waste of precious time and with that time span–wasting away more of our lives!

  4. Billie Moore says:

    Jennie, do you know how long they intend the film to be, in minutes? Is it to be a short or a feature film documentary?

    Thanks, Billie

    • Jennie Spotila says:

      I don’t know for sure, and I don’t think they have committed to a specific length. However, given the breadth of the film (telling seven patients’ stories) I expect it will be full length.

  5. Anita says:

    wow this is an amazing film in the making. I am grateful for the efforts and all the contributions that are bringing all of our suffering to light. we are not alone, and lately the unity if the patients fighting for themselves has brought comfort in a cool way. we ARE being heard and we are NOT going to back down or go away. we have been hidden far too long. from what are we hiding? We have done nothing wrong, have nothing to be ashamed of, we are SICK!! thank you Occupy and Canary, you guys rock!!

  6. Ess says:

    This is it–and when we ARE seen out in the world–when we DO push ourselves out on what verrry little ‘steam’ there is–others see us ONLY in that ‘snapshot’ of a short time frame–and we ‘look fine’ and might even be ‘glowing’ with the socialization of being out in the world for that brief ‘snapshot’ (even if that happens to be for an appointment OR meeting)–we are free of the isolation in this illness for that brief ‘snapshot’. The world doesn’t see what it is like for us ‘before’ or ‘after’ that ‘snapshot’– to get out in the world AND the crash after. Stuck in this ‘oppression’ of ME/CFS illness–along with feeling very unwell, we do NOT function in any aspect of our lives, like the rest of the healthy population. Ohhh, we used to when we were well / ‘healthy’–BUT that was looooong ago!

    That ‘snapshot’ others see of us is definitely NOT the whole story and we are ‘far from fine’–we are extremely ILL . . . with NO fix–and with NO fix–the disease progresses.

    ‘Simple’ things that others take for granted (as DID WE)–for example, daily showering—turns out that was a ‘luxury’ of the past in our ‘former LIVES’–and now translates to once/week (hopefuly!! but no guarantee)–the day before the outing–because there is too much energy/effort used to shower and get out on the same day. I’m only mentioning one example here as to how our daily life has changed and been stolen from us in this disease of ME/CFS; to describe the rest would take a book. We are living like this day after day, week after week, year after year–leading to decade after decade.

    WHO is ‘the power’ that is deciding this SICKLY and NON-existence for us inperpetuity??

    What those powers that be have done to millions of verrry ill PEOPLE is inhumane, soooo verrrry harmful, disrespectful–and criminal — e.g. –the known fact that millions of dollars were funnelled AWAY from ME/CFS research. WHO is running this show–and why are they NOT held accountable ??!!! WHY are they allowed to HOLD US HOSTAGE in this horrid biological illness AND ‘get away with it’ ??

    Actually, all of this collective CONTINUATUAL/ONGOING debacle (EGOS, PERSONAL AGENDAS, BACK DOOR POLITICS) and, now, front-row-centre the IOM contract — is serving to be a much warranted pivotal time for ME/CFS awareness, springing up in action / reaction AGAINST the IOM contract, LED by the ME/CFS Experts, Researchers and Advocates WORLD-WIDE!! The Experts and Researchers KNOW the SCIENCE and they are seeking the JUSTICE of this SCIENCE (for us)!! WE can’t thank them enough!!!

    On a personal note–these actions have paved the way for me, and I am sure countless others, to literally come out of the closet (altho housebound for the most part 🙁 — to speak up, sign-up on the petitions, etc.–sending to our friends and family enlisting their support as well.

    Coming out of the closet with the disease of ME/CFS?? Wellll, yes . . . as this chronic debilitating disease has been kept ‘in the closet’ / relegated to the waste basket and is fraught with OLD INaccurate MISinformation.

    How do we tell people about this horrid disease and what ‘living’ is like for us because of this ‘mystery’ disease of ME/CFS . . . ??? What do we say so that they will understand? This debilitating life-altering biological disease ME/CFS does NOT have a name like ‘cancer’ that everyone can identify with. It has been ridiculously MISnamed / ‘labelled’ / stigmatized as CFS. Soooo, ‘what’s the big deal with that — CFS . . . ?’ The parallel is drawn for others as a form of ‘tiredness’. What’s the big deal they wonder ?!! Nice work, ‘powers that be.’

    Ethics questions abound and MUST be asked as to WHAT IS REALLY GOING ON regarding the reprehensible oppressive behaviour of ‘some officials’ towards the ME/CFS community with an agenda to cause perpetuation of ME/CFS for us AND, YES, the SPREAD of ME/CFS globally to other people in our communities.

    WHAT a nightmare to behold that there ARE those WANTING to hinder (and cover-up) timely evolution of the SCIENTIFIC answers to ME/CFS. We have already lost far too may years of our lives because of the PURPOSEFUL obstacles put up against getting to the answers. Without a fix–we are in this disease until death–our deaths! And the generation that follows with us–we have a responsibility to speak up for CHANGE in this debacle UNJUSTLY and UNCONSCIONABLY FORCED on us!!!

    AND then . . . along with our most wonderful ME/CFS Experts, Researchers and Advocates, comes CANARY IN A COAL MINE–mission — bring about unprecedented awareness of the truth and SCIENCE surrounding ME/CFS–to effect saving our very lives!!!

    How fortunate we are to also have the professionalism of Jen Brea and Kiran Chitvanis and their vision of CANARY IN A COAL MINE to speak our truths . . . to take the small snapshots (that the public sees of us) and turn that into a feature documentary film.

    Yesss — we ARE going BIG !!!

  7. Sing it loud sisters! Get it out there!

  8. Great write up, Jennie. I’m with you, I have got a really really good feeling about this film. My prediction is that is going to go huge. Just a hunch. I think we’ve been waiting for someone like this to come along for a long time. I’ve only been sick with M.E. since 2009, but I remember all the crap that went on at Incline Village and I knew there was controversy and I remember being really angry about the yuppie flu b.s. I didn’t buy if for a minute. I knew something was wrong. I din’t know the whole story but I was following it and at the time I was a yuppie in my 30’s and just taking off in my college career. So I was paying attention. I’m sad that it got me thirty years later. But oh well. Thanks so much for all the energy you put into this blog. I’m a writer too, but man you are one prolific woman. Props to you. Sincerely, Katherine

  9. Ess says:

    I also think the word ‘chronic’ gets in the way–it has LOST its meaning — ALWAYS SICK paints a more accurate description.


  10. Claire says:


    I would so love to copy what you have written here and post it to my Facebook timeline to share with my FB friends. Thanks for writing this.


  11. Ess says:

    ABSOLUTELY, Claire—please do!!!! Spread the word–as I say–there is no time like the present to ‘come out of the closet’ with this horrid disease.@Claire

  12. Bubes says:

    I don’t think the media coverage separates this film from the others.

    The Blue Ribbon was covered in USA Today, Yahoo, New York Times Hearst-Syndicate, etc. It generated just as much national news coverage.

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