Monday, November 11, 2013

10 Thoughts on "Canary In A Coal Mine" and "Under Our Skin"

It's been five years since the controversial award-winning film about chronic Lyme disease, Under Our Skin, was first released.




When it was first released, Under Our Skin provided catharsis for me as a patient who developed chronic pain and chronic fatigue since that fateful day I received an infected tick bite and fell ill.  It was the first film - the only film, in fact - that I could point to, share, and say to others, "Look. Watch. I'm not the only one who is dealing with this problem".

And share I did. I bought the DVD and gave it to a therapist who at the time was working with me on tips for coping with secondary depression. I showed it to a few close friends who wanted to know more about the chronic Lyme disease controversy. And I sent a copy to my parents.

Under Our Skin helped open the door for discussion about my illness, it made me feel less alone in my suffering, it validated my condition for others, and it brought up the very controversies involving chronic Lyme disease I'd been discussing with other patients in a way which easily summarized them for those new to it.

Lately, I think more about Under Our Skin in a broader sense and less about it being a piece of my own personal chronic illness manifesto. Here was a film which scored an Academy Award nomination and several international film festival awards - no small feat for a documentary film of this nature. Here was a film which took Lyme disease into the spotlight and encouraged people to take more steps to prevent tick bites so as to avoid having the kind of experience I've been having. Here was a film that spoke to a larger proportion of the population than I originally thought possible.

"Lyme disease?" I remember muttering to myself, "Who the hell wants to watch a film about that except patients?" But watch it they did.

Whatever your personal opinion about Under Our Skin is - like it or loathe it - it spread awareness about the issue of chronic Lyme disease and touched on why the topic of persisting symptoms in patients has become a loaded subject.

Conditions like chronic Lyme disease, fibromyalgia, and myalgic encephalomyelitis - also known as chronic fatigue syndrome - fall outside the usual diagnostic box and frustrate doctors and patients alike.

Patients inexplicably report being diagnosed with depression or anxiety when they're running a fever and have joint pain, or report being diagnosed with anxiety when they're dizzy and have signs of orthostatic intolerance. Instead of more involved investigation and attempts to improve patients' symptoms, some are only sent home with a prescription for psychiatric medication and told to call if there are any side effects.

Doctors, likewise, mention patients who clearly have something going wrong but they have no idea how to help them because the literature just isn't there; the guidelines they are supposed to use have no contingency plans for those who fall outside the box. Some want to help, but they don't know where to begin. A rare few are willing to experiment and try an out-of-the-box treatment for the out-of-the-box patient, and some do so at a risk to themselves.

If there were more research, if people invested more in projects to help people with such conditions, then maybe we would already have more answers which would help people. As it stands, funding for such research is slim, people are not aware of how profound an impact these conditions can have, and as long as many patients are so sick that they venture outside tentatively (if at all), the only way they can stop slipping through the cracks is to make their voice heard without leaving their beds.

It is these kinds of points which were made during the Kickstarter campaign for the film, Canary In A Coal Mine, that grabbed my attention, including this one statistic: "Male pattern baldness gets more money for research than myalgic encephalomyelitis/chronic fatigue syndrome".

It has to be one of the most ridiculous statements made in remarks sandwiched between footage for the film. Or rather, it would be ridiculous if it weren't for the fact that it's actually true. The reality is sad: ME/CFS only receives about $5 million in NIH research funding annually compared to the hairless wonder's many million dollar pot (hell, just this one private company announced an $11 million funding round for research) and an industry which generates hundreds of millions in profit. Bill Gates also stated earlier this year that male pattern baldness received more research funding than malaria - another sad surprise. So when $2 million of NIH funding is given to 3 different institutions to study ME/CFS, it's considered a big deal - however, that amount of money pales in comparison to the funding for research on other conditions.

Sadly, somewhere along the line, it was decided that vanity was more important than a person's ability to get through their day like a normal human being, such as being able to hold down a job and go out to a movie after work - maybe even have a family. Things like that. Normal, you know?

(I don't know about you, but screw my insecurities about going bald - If I had to choose between being bald and having ME/CFS or chronic Lyme disease, well, show me the god that can grant me this wish and let's get that shaver rolling. I can join the Hair Club for Men later and get a transplant or an outrageous selection of hair pieces.)

Chronic Lyme disease falls into its own funding hell, because while Lyme disease receives a fair amount of funding compared to ME/CFS, it's still relatively less compared to other conditions and projects which are specifically about chronic Lyme disease are rare.

Twelve years ago, the NIH Lyme disease program officer said data collected from the Klempner antibiotic trial for chronic Lyme disease would be used to help develop new innovative treatments for patients. Well, it's twelve years later, and the number of innovative treatments for chronic Lyme disease which have been developed from this NIH-NIAID project data are exactly zero.

But getting back to Canary In A Coal Mine...

When I first saw the appeal for Canary In A Coal Mine, it came via a tweet from a member of the ME/CFS community. I didn't know what to expect, and when I played the trailer, I was immediately taken in by it.

Canary In a Coal Mine began as a Kickstarter project initiated by Jennifer Brea, a Harvard doctoral student on medical leave whose life has been changed dramatically by myalgic encephalomyelitis (more commonly referred to as chronic fatigue syndrome, a name which does not do the condition justice) and Kiran Chitanvis, an independent filmmaker who attended NYU Tisch School of the Arts. Jennifer Brea directs the film, Kiran and Jennifer are both producers, and Kiran is director of photography.

Within days of posting the project on Kickstarter, the initial funding drive exceeded its first goal of $50,000 and today, weeks after posting, it has received over $150,000 funding towards the entire $200,000 needed to complete the film.

How has this independent film produced in dimly lit bedrooms using iPads and video cameras gained such a meteoric rise in support in so short a time? The answer lies in the trailer presented on Kickstarter, which struck such a note with viewers that they immediately felt inspired to donate:




I've viewed the trailer several times, and with each passage the same scenes stand out for me, over and over. As a whole, it is a masterful piece which builds suspense around the mysterious beginnings of ME/CFS with a history of unusual outbreaks of illness where no one could pinpoint the cause to demonstrating how ME/CFS has had a profound impact on its sufferers and the current controversy over the scientific positions on what causes ME/CFS.

In this regard, the trailers for Canary in A Coal Mine and Under Our Skin are similar: Both hint at a history of controversy and mystery surrounding the condition. Both highlight the patient experience, by capturing the suffering and changed lives of individuals and families whose lives are abruptly jarred by disease. Both point fingers at doctors who claim patients' symptoms are psychological in nature rather than looking at evidence that the condition is physical. Both open the door into sharing moments in people's lives which are difficult and usually suffered alone in silence or only with those closest to them.

But where Canary In A Coal Mine immediately diverged from Under Our Skin as a concept is what truly got to me, and almost made me break inside: The trailer is in large part made by the very person who is invested in it the most: Jennifer Brea, a patient suffering with ME/CFS.

As Kiran Chitanvis, the independent filmmaker directing the project states, the film is intended to be a narrative which pulls the viewer into the experience of what it's like to have ME/CFS in a way that hasn't been done before. And this is one reason why the trailer has been a success: It subtly places the viewer in the position of imagining what it is like to have ME/CFS and have to live life around and through it.

It can do so effectively because Jennifer Brea is telling her own story, filming her story, interviewing others about her story, and by extension, the making of the trailer and the film actually become part of her own story.

Footage in the trailer and supplemental videos on the Kickstarter page show the viewer how difficult it is for Jennifer to work on the film and the costs on her body of pushing through a 12 hour day of shooting - a day which will not be repeated because the cost is too high. To emphasize this decision, the statement is made that pacing is important to preserve Jennifer's health, and that if 6 weeks' worth of shooting the film has to be done over the course of a year or more, then so be it. There is no race to finish the film. The important thing is to finish it, period.

We witness the difficulty involved in watching Jennifer slowly walking, staggering towards a vehicle and outlining the planning required for a journey that most people don't give much thought when they get in a car for a one hour trip to New York City. We see Jennifer slowly struggling to stand up with a laptop in her arms, only to watch her fall forward. We observe Jennifer lying down on a couch in a dimly lit room, too exhausted to stand while friends socialize in a kitchen down the hall. As time trickles by, we catch glimpses of how plans and key milestones Jennifer had planned for her life have been railroaded into some murky unknown future where it's uncertain what will happen.

This is a trailer which inspired other patients, caregivers, and advocates to fund the project because it is a film that is not only speaking on behalf of all the patients who cannot march on Washington to request funding for more research, who cannot stand for more than a few minutes or even a second, who cannot speak for themselves - it inspired others because it is by a patient, about a patient, and for patients in the voice of a patient - and using this perspective to spread awareness to those who do not have ME/CFS. This angle is one way in which it is very different from a documentary like Under Our Skin.

One of the scenes in the trailer which put a catch in my throat is shown in this still:

Jennifer Brea mapping out the pathways and immunological profiles which underlie part of the myalgic encephalomyelitis (ME) puzzle, or what American researchers renamed "chronic fatigue syndrome" (CFS).
© 2013 Canary Films with permission

I can't get this scene out of my mind, because this one moment captures so much of my own experience as chronic Lyme disease patient with an diagnosis of ME/CFS as well.

While much of my limited energy goes into a few mundane tasks during the day, it also is spent on research related to Lyme disease and immunology, microbiology, molecular biology, and genetics. It is spent pouring over many documents, where I am trying to piece together parts of the chronic Lyme disease puzzle and figure out what happened to me - and to see what novel ideas I can come up with that might make my quality of life better.

This one snapshot of Jennifer Brea's life could just as easily be a snapshot of my own. I couldn't help but be moved by watching someone else having an experience similar to my own; someone who wanted to do the hard work of getting answers and learning as much as they could even with the challenge of brain fog, overwhelming fatigue, and other disruptive symptoms getting in the way.

And at the same time, this scene is also one which triggers tremendous anger. Why should she - and why should I - have to be placed in a position where we are compelled to figure out what is going on with our conditions? Why isn't there more research for people in our situation? Why aren't there more doctors who can help us? And most of all: Why the hell do people value a full head of hair over helping people be able to sit up and feed themselves - let alone go to work every day and have a life? Because that's what the dollar signs say. That's where the money is going.

Another scene which struck me is near the end of the trailer, when Jennifer sits in a wheelchair in the yard and watches others doing yard work:

Scene from Canary In A Coal Mine © 2013 Canary Films with permission

Howard Bloom, writer and former publicist in the music industry who came down with ME/CFS years ago does a voice-over during the scene, saying:
"There is a future you take for granted every day and never articulate to yourself - and yet it's always there. And when you come down with an illness that has no end, it strips away that idea of a future."
Howard later discusses the ability to see the infinite in the smallest detail as one of the benefits of having to slow down due to a chronic illness, and while this experience can soften the edges of the blow of having a bad day, it in no ways diminishes awareness that one's life plans have been altered - in some cases, irrevocably.

These scenes are not about the science behind ME/CFS, yet they strike a personal chord for someone in my shoes and I suspect they stand out for others who have been on the same path. Some of us have been up to our eyeballs in research and controversy - just for a moment let us reflect on our humanity in facing a difficult situation.

While all I can write about at this stage of the production is about Canary In A Coal Mine the trailer, I am hopeful that Canary In A Coal Mine the film will retain the same focus I saw in the trailer which put the patient experience front and center. I am hopeful there will be more discussion about the realities of ME/CFS and the scientific evidence supporting it as a physical, immunological condition and not something akin to the 19th century version of hysteria. And most of all, I am hopeful it is an experience Jennifer Brea will get through, intact, with adequate rest and a sense of major accomplishment on the other side of it.



[Edit Nov. 12: Updated to include info on director and producer roles by Jennifer Brea and Kiran Chitanvis.]


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The written content of this work by Camp Other is licensed under a Creative Commons
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All images subject to copyright and are used with permission of Canary Films.

10 comments:

  1. Thank you for posting this.

    I got tears in my eyes when I saw the white board scene. I have a white board at home that still has the immune cascade written out and diagrammed on it. I put it up there in 2008 when I was trying to understand the possible implications of my abnormal complement tests, 2 years before I got my neuroborreliosis dx.

    ReplyDelete
  2. loshakova - you live! It's been a while. How are you doing?

    loshakova wrote:

    "Thank you for posting this."

    You're welcome. I had to post it. After having seen the trailer for Canary In A Coalmine I felt strongly compelled to write about it. The attitude Jennifer Brea has in taking this on despite being as ill as she is and her own will and intelligence moved me to write. It was inevitable.


    "I got tears in my eyes when I saw the white board scene. I have a white board at home that still has the immune cascade written out and diagrammed on it. I put it up there in 2008 when I was trying to understand the possible implications of my abnormal complement tests, 2 years before I got my neuroborreliosis dx."

    I was stirred by it on different levels. As I wrote - moved, at first, and then moments later, angry. It's great that we are thinking alike, as patients, and trying to figure out what we can of our own puzzle. One other person on my Twitter feed told me when he ran out of whiteboard space on his wall, he continued to write on his door. It was astonishing.

    We can do a lot but we can't do this alone. Somehow, someone has to stop pouring hundreds of millions of dollars into research for male pattern baldness and begin helping people whose lives are trashed. Not that I don't have any sympathy for hair loss, but dude - priorities. My friend who has cancer will tell you they want the cancer GONE, hair or not. They have their priorities in order. The rest of the world needs to get behind them, and get behind us.

    ReplyDelete
  3. Anonymous/Chen-men,

    I did see your comment, but for some reason Blogger messed it up. However, I am quite certain that this is the only comment which Blogger has messed up when I published it for you.

    If you do not see your comment right away, that is because I moderate each comment. I have had a lot of spam - as most bloggers do - and this is the only way to make sure that spam does not get automatically published. All comments must be moderated first before being published.

    I know what your comment here stated - you mentioned having trouble posting and seeing your other comments, mentioned being a researcher for many years, posted about pulsing antibiotics, and posted about the relationship between Lyme disease and multiple sclerosis (MS).

    Similar comments by you have been posted numerous times throughout this blog and I have posted every comment and its full content (except for the one immediately above this, which Blogger somehow deleted its content) and responded to every one instead of writing a new blog post sooner.

    Your comments and my responses are found at the following locations, since you left them on different unrelated posts throughout my blog:

    I posted responses to your comments
    Here (CDC letter link - 5 part response), Here (24 hours - 1 part response),Here (Researchers and Persistence - 1 part response), Here (Antibodies - 3 part response), Here (Tired of Lyme - 2 part response), Here (Lyme Excitotoxin - 1 part response), Here (Tick Spit and roundbodies - 1 part response), and last but not least, Here (Friday Four - 1 response).

    I would like to request anyone else reading these comments to report back here, on this thread, to tell Chen-men if they can see both his comments and my responses.

    If anyone other than me can see Chen-men/Anonymous's comments on the above linked posts, then that indicates to me that Chen-men should figure out why he cannot see his posted comments and my replies to him.

    Chen-men should try clearing the cache on his browser, rebooting his computer, and trying to view those comments again. Either that, or borrow someone else's computer.

    Also, I would like to request that Chen-men lets me know that he can read my comments first before submitting another one, because I have already responded to many of his questions and ideas.

    This is a lot of writing for me to do and I need to rest more often than usual. Please make sure that you have read the responses I've given and acknowledge what they say before adding a new comment.

    Thank you/Danke.

    CO

    ReplyDelete
  4. There is a huge expectation amongst some people with ME that this film is going to somehow change radically how people in general veiw the terrible illness that is ME.
    And I hope that they are right.
    But for this to happen, this film has to be seen by the general public, health officials, doctors etc. and be watched with an open mind.
    For some this will be possible but for others it is not so certain.
    I wish the film all the best in achieving it's goals and hope that all those whose expectations are high will be rewarded.

    ReplyDelete
  5. Loved reading this post and your hopes and aspirations for Canary in a Coal Mine. I'm currently writing an article about the documentary and how it is affecting the community of CFS/M.E patients. It would be great to reference your blog and maybe speak with you further.

    Please get in touch if you are interested!

    ReplyDelete
  6. Camp Other,

    I like your blog. How can I contact you?

    Thank you

    ReplyDelete
  7. Hi Anonymous and welcome to Camp Other blog!

    Thanks for the compliment.

    Try me at gmail. CampOther there.

    CO

    ReplyDelete
  8. Thank you so very much for this blog concerning "Canary in a Coal Mine." It was beautifully written. I, too, live with ME/CFS. The potential of this film has given its sufferers great hope in drawing attention to our plight. Thank you for helping to spread the word. I wish you better health with your own challenges with Lyme Disease.

    ReplyDelete
  9. Hi Donna,

    Welcome to Camp Other blog. Thank you for the compliment.

    I'm sorry to hear you live with ME/CFS, and I hope, too, that "Canary In A Coal Mine" spreads awareness about your condition for the many who suffer with it. Not only awareness - but the need for targeted research to help alleviate the suffering.

    I hope I get better. In some ways, I am better than I was the first year I was sick with Lyme disease and babesiosis. In other ways, I am worse. There is slow, uphill, stepwise climb to getting better and often it seems that time is a huge factor in improving. That, and to not stress - no matter what method of treatment you try.

    Best wishes for your improving health,

    CO

    ReplyDelete

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