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Just woke up to the $200,000 mark, a very nice day this is. I had no doubt that you would and we would make it. I am so happy for you, Kiran, Omar and those around you; and so happy for all of us that have helped in small or big ways and followed this through. x
Amazing to see this break the £200,000 mark! Been keeping an eye on it all day. This is the first KickStarter I've ever backed and I can wait to follow the journey over the coming year.
Having had CFS for just under 10 years now I've found this possibly one of the most important pieces of outreach about the illness I've seen.
Good luck for the last 37hrs!
Have increased my pledge too - we are so very close to the full $200,000 now, I know we as a community can do it. Very uplifted to see how much everyone in the CFS/ME community has got behind this project. We're all so very tired of being invisible. So wonderful to see this film getting the support it deserves. Great work all of you!
OMG - while I was typing my comment Canary in a Coal Mine made it to the $200,000 mark!
Yay, yay, yay and yay!
I am so happy and proud of you for telling this story. This will change everything! Great work! ;-)
Danielle and Indy...oh, you are so right! I am fortunate I still have my dear 81y.o mother to take care of me, bless her. I should be caring for HER and the guilt is tough for me. After 15yrs I have no-one else left except my kitty. Sadly her distinct lack of thumbs (amongst other things) puts her out of the carer stakes. Last month was assessed for a Nursing Home (yikes). Of course, they said I was too young for "high-care", and couldn't meet my low sensory/no chemical/no fragrance needs, so hope to try to get some other plan organised to stay in my own home when my mother is too old to keep doing everything for me (or I might recover of course). I think the stigma of being unable to produce energy on demand means we can become the 'lepers' of our age. Those beneath contempt for the normal active exercise focused world, oblivious to any illness that could possibly defy the wisdom of a good work-out or a run. I'm lucky to be vertical at all, never mind actually move at the same time. M.E. is not a 'sexy' disability. We can't go in the Paralympics unless maybe long distance sleeping or maybe meditation becomes de riguer, and so no-one sees our courage. No-one puts our pictures on motivational posters... of course they darn well should! We are amazing, strong, patient, brave, adaptable, positive, motivated, indomitable people. WE WILL RISE! Our time is coming... thanks to this film and all this support. I just upped my pledge again. Hugs to Jen, Kiran Omar and fellow canaries everywhere :) Not long now, our goal is in sight. xxx
Btw when it was 5008 to go I added the 8...and then the total was 5015 to go so then I added the 15 thnking i had made a mistake and the total went down again. Ugh...wanted 95, 000. I need to go to sleep. Just telling u Jen.
Every time I read a comment that talks about the isolation, disbelief and disregard that goes along with this illness, I say, "Yes! Me too!" I've been dealing with this condition for at least 15 years and I still never cease to be amazed at just how horrifically we are treated.
A year and a half ago, a friend of mine with this condition committed suicide. I thought that telling people (friends, family, contacts) about him would elicit some kind of sympathy for how horrific it is to deal with this.......finally. Nope.
Even my own parents (I don't talk to any of the rest of my family after 15 years of zero support) have listened to me cry for hours and hours and hours on end and do not comprehend the disregard and invalidation. They know my only sibling has NEVER asked how I'm doing (let alone offer support) in 15 years and still, that does not resonate with them. They've watched how much I've suffered physically when they used to have to do 100% of my grocery shopping for years on end...and still really no comprehension. They believe I have a serious health issue...just do not take in how severe it affects EVERY aspect of my life. Of all of our lives.
It would be interesting to reveal the long term effects of having a condition like this. I find that after this long, I have virtually NO ONE in my life to count on. I wasn't married with this started at 29 years old, and since then every single guy has dumped me citing some reason around being sick. My family pays no attention. My parents are elderly and semi-rapidly declining (they now need me) and my lifelong friends have too all "abandoned" me. And now I’m careful what I share with anyone, which means I don’t have a close connection with a single soul…and I don’t have anyone to call when something good or bad happens in my life.
My story may be a little different though. I started seeing a doctor well-versed in dealing with these conditions month 2 into being sick. For the next 10 years, my health went up and down -- at times I was well enough to earn an income at the level of buying my own home.
But, inevitably, the bottom would fall out again...and then so would my finances – with absolutely nowhere to turn to keep what I had been able to earn for myself. We (parents and I) were always trying to financially support my $1200-1500/month out-of-pocket medical treatments. Then, about 2 years ago, I started a treatment that has turned my health around. While still slightly limited (such as when traveling) and needing to have control over my daily schedule, I usually do not have symptoms anymore. And I was once severe enough to be homebound. So…great! After 15 years of enormous amounts of physical suffering, no symptoms should mean my life is great now, right?
Well, I have found personally, that being sick so long has driven away everyone but my parents. As horrifically suicidally awful as being constantly sick is...this segregation and disregard *might* even be worse. I am tortured every day by the lack of support. Emotional or otherwise.
And sometimes, people are just downright cruel. Just this week, someone said they have warned all of my friends about my asking for money and that I'm a user. People sometimes turn to their friends when they have no family to help. And they turn to churches and government agencies...all of which have limits and will stop helping you at some point. Even if all you need is bridge to get by until you get better and back to work – a bridge you’ll even pay back. And well, this illness has no limits to how much it will devastate...so the two do not work together. And we suffer more as a result. Then, once you’re in poverty, it’s impossible to treat this condition adequately. Without a miracle. The treatments are just too expensive.
I hope you find the audience who will listen to the amazing story I’m sure you’ll put together. I truly don't know what it will take to turn the hearts of people so that they care about this issue. As a never-say-die-fighter-type, I have personally tried for 15 solid years, to no avail. People respect what I have to say less than they did when this started...and I've even more-or-less gotten it managed to where I can work 7 days a week outside the home.
I filled a credit card to support this documentary...that's how strongly I feel something HAS to be done. We live like animals and it appears that no one (except us a few select others) cares.
Maybe, finally, this documentary will give us a voice. It’s a very tall order and thank you for your efforts.
Yes...well said Danielle...
Great idea Penelope! CANADA!
Well said Danielle!
I wonder how many different countries this represents?
PS 2334 BACKERS AND $5008 TO GO. IF EVERYONE INCREASES THEIR PLEDGE BY $2.15, WE'RE THERE!
Jen and Kiran, You have given so much hope to this community. I have been simply brimming with optimism and awe at your masterful and innovative command of social media. I look forward to your updates with thrilled anticipation and delight! After over a decade and a half of this ghastly disease I feel we are finally reaching a Tipping Point. Our experts are banding together. Patients like you are leveraging the media and your brilliance. I have no doubt that we will meet $200K! Just $5328 left to go and I have gladly increased my pledge a few times.
There is however some important validation to consider even if we don't meet the 6500+ backers. For a disease that is so complex and invisible, most ME patients have lost their support systems. Exercise intolerance provokes not only confusion, but societal outrage because it is so entrenched in our society as a virtue, even an imperative. In other words, ME patients are not just seen as malingerers. We are seen as stupid, lazy, defiant malingerers. I am deeply fortunate to have a supremely supportive spouse and children, however I, too have lost lifelong friends to disbelief and disdain. I feel tremendous empathy for patients and their loved ones, even the ones who have deserted and abused desperately ill patients. This disease cuts a wide swath and is so counter intuitive and perplexing that it's no wonder that we exist in a sea of disbelief, particularly when this disbelief and sanction is reinforced by conflation of ME and idiopathic fatigue; pseudo-science, tradition, and we've-always-done-it-that-way'ness. All this to say that I think it's a massive, massive achievement that we will have reached the $200k without - WITHOUT - the most of our support of loved-ones. What you see in the jawdropping pledge total is the result of isolated, often poverty-struck patients digging deep because they are desperate, severely ill, and because finally, finally, they see a beacon of tangible hope. If we don't make it, not reaching 6500+ backers is no cause for shame. The relatively low number is simply testament to the reality of the severe isolation this disease metes out. Hopefully in 5 years, similar fundraising efforts will be met with overwhelming support by loved-ones, and there might be some healing for patients and abandoners alike. Your documentary is sure to help us on that path.
Thank you. And please take care of yourself. Your project has the benefit of visibility and momentum now. You've probably covered all the bases but just in case: maybe you can delegate more, and of course pace judiciously to protect your health?
A FAMOUS QUOTE THAT FITS US WELL.
“The greater the loyalty of a group toward the group, the greater is the motivation among the members to achieve the goals of the group, and the greater the probability that the group will achieve its goals.”
― Rensis Likert
JEN, I DO BELIEVE WE MADE IT! ONLY $7459.00 LEFT TO GO AND I KNOW WE CAN DO THAT AMOUNT IN 51 HOURS. YIPPEE SKIPPY!!! LET THE FUN BEGIN. SO EXCITED.
And gave another shout out on my blog and Facebook. :)
I just added to my pledge. We can do this!
Have just added to my pledge :) This project means so much to me, it has renewed my hope and hope is everything for us. Godspeed for the home stretch.
Grateful hugs to Jen, Kiran and Omar.
Just increased my pledge by $25.00. Great Idea.
So did I!
Hi Jen and Kiran,
I just increased my pledge.
It is so difficult to live with something that nobody around me seems to understand and with very few accepting the severity of an illness with a name no better than Chronic Fatigue. Thank you so much for finding this platform and telling our story.
Jennifer, you are so great, so inspiring and so brave. Thank you so much for doing this documentary! This is our time. I hope that this documentary can raise awareness. I can understand your motivation to do something. cause i can understand that you are refusing to accept to live with this devastating illness your whole life. i for myself cannot accept this.
take care of you and hopefully we reach the $200.000 and you and your supporters are able to do the film you are wishing to do. so fare, what you have done, is really impressive.
thank you jen!!!
Sincerly Lilly from Germany
Backers...Add to your pledge. If all the backers added an average of $10 to their pledge we would reach our goal. We have almost 3 days ... there will be more backers...so we don't need even that average. So add what you can. Is this a success already ... YES. Having said this is reaching our goal important... YES. We have to make statements whenever and wherever we can. So lets show our resilience...our ability to get things done...lets finish what we started with a flurry...lets make a statement.
Hi Jennifer and company! i think what you're doing is fantastic. I write a blog (well, my alter-ego does!) on blogger and strangely i called it 20th century canary because the imagery of us being Canaries in a Coalmine occurred to me too - honestly!! i didn't plagiarise! 'haven't written much last few weeks due to lack of spoons and life getting in the way, but please do go and have a look if you get a chance, many of the blogs are about life with fibro or ME, although there's plenty of political rants and general rubbish as well! well done you, this could be the biggest thing to happen to inform the world about ME!
The author of this comment has been deleted.
THANK YOU everyone who increased their pledge by $5, $10, $25 dollars. Every little bit helps – immensely touched by your enthusiasm and generosity!!
I've added my last Gold Nuggets...
SUCH an important cause to donate to!! Thank you again, Jennifer and team. Just an idea--with permission from our nearest and dearest--we can also donate on their behalf.
Great Sarah....a Backers movement is afoot....
Great idea Robert. I have just doubled my pledge to $10. Anyone want to join me?
I was just wondering. We are getting so close. I know we have Thunderclap coming up in a few hours and then Stephen Fry's Twitter and maybe some other tricks up your sleeve. There are 2,100 backers. Would it be inappropriate at ask the backers to add $1 - $10 to their pledge amount. If a backer feels like giving more that would be great. I look at it this way...even if you got 500 people to give an an average $5 dollars more that would be $2,500. Maybe this is not appropriate or tacky or whatever. Let me be the first to add to me pledge.
It's been so uplifting to see the support come in. Thank you Jen, Kiran and ALL those behind the scenes enabling you to do this. Don't push too hard Jen! Prayers are with you.
United we stand, even with orthostatic intolerance!
Dear Bobby and Tito:
Thank you for the kind words about the film project and for your generosity. I'm sorry to hear that you had difficulty with donation process. After you select a reward (including "no reward"), it is necessary to click a "Continue to Next Step" button on the bottom of the screen. It should appear automatically but it can also be found by scrolling down the long list of rewards. To see donation process from end-to-end, I recommend this one minute video from Kickstarter:
With gratitude, Omar (Jen's husband)
Go girl! I cant wait for the finished product. I have suffered from this stupid ilness for 20 long years and feel so frustrated by the attitudes I have come across over the years. From both the medical proffession and the general public. The medical proffession as a whole has been stuck in the 1940's and 50's when it comes to M.E CFS and hasnt moved forward since then. Its about time some one kicked the system into motion, so go girl, we need you! I live in the UK, I really hope I can access your finished film from here. Thank you so much! Sarah x
This is a very, very good cause but trying to donate is very frustrating. I was unable to do so. After I typed in $200.00 and checked "no reward" nothing happened. There was no "second page" to go to or any indication as to how to get to one. I want to charge my donation on my credit card but there is no avenue to select a card type and add the card number. San Francisco
Thank-you SO much, Jen, (and of course your partners) for your incredible efforts in creating this film. You must surely realize now that this documentary is an unbelievably important gift to all of us who have suffered through M.E.. We are all still fighting to survive, so do not have the strength to take on a project of this scale, or to tackle in any large way the problem of misunderstanding & mistreatment of M.E.. You have suddenly appeared in our lives and done this amazing thing for all of us. I for one am eternally grateful for you and your generosity and commitment. Living on a fixed income, I didn't think I could contribute financially, but the momentum is so contagious & so joyful that I decided I could manage it. As I skimmed through the donation options, I came upon the "DVD" choice, & started to cry. It was an immediate gut reaction of gratitude for the fact (indeed, even the possibility !) that, after all the years of deeply hurtful disbelief & dismissal, I might finally hold in my hand a DVD, a film, a concrete piece of "proof of life with M.E.", an illustration of our silent suffering, which the medical community and the public at large will not be able to ignore. I was so overcome with tears of gratitude that I had to leave the site and go back the next day to donate. I just want you to know the incredible importance of this film and the visceral response it evoked in me, as someone who has had to cope with M.E. for over 24 years. (It knocked me down when I was a happy, vital, successful 30-year-old.) It has been Hell, but your film makes it worth the wait.
Thank-you so much again, and please do take care of your own health.
With much love, from Ottawa, Canada.
M.E. may have dipped our primrose wings in lead and silenced our song, but widespread ignorance, denial, stigma and politics have become our iron cages. With this wonderful film as a catalyst and Jen and Kiran's incredible determination, hard work and bravery, our liberation becomes possible. One day, we will fly again.
With deepest gratitude,
Kaye (a horizontal canary in Melbourne Aust, severe M.E. since 1998)
I've been sick since 1996. Watching your video was really a very thrilling experience. So thankful to you for doing this. If the finished product is anything like the trailer, it has got to be a big hit!
Also @Gina Livingston, what an amazing offer for you to make! I hope they take you up on it. :) Few loads are heavy if everyone lifts together. :)
As a 9 year patient of ME I am extremely excited about your film. I wish I could donate more than the $65, but being unable to work makes it difficult to donate as much as I would like. I have gotten family and friends to donate also, as I really want to raise awareness for this project because this project will raise awareness for all of us. Crossing my fingers that you make the $200k goal to get it inot theaters. I am already planning to attend it in a theater with as many friends and family as I can bring along. Bless you for taking on such a project with this condition. I am lucky to just get out of bed most days, and I could not even imagine taking on such a venture. More power to you! Much love.
What you are doing is truly inspirational. Your trailers etc are all so..'grabbing'. You make the story so profoundly interesting. A word to the wise tho', I've had this since '05 and know how a big job can completely wipe you out. Without you, there is no story. Maybe you've already learned pacing but seeing you on the floor, while heartbreaking on a personal level, is a little scary for the project. I once tore down my bathroom to renovate and ended up with a torn up bathroom for years before I could pay to get the job done. I once flew to Europe and spent a year recovering. We've all got these stories. Please take care of yourself. Release in 2116 if you have to.
Jen, I'd like to contribute my "original music/songs" for the film soundtrack! It would be great to be able to help out the project creatively as well~
Jen, I admire your strength, your creation of this wonderful project you're doing for "all" of us around the globe, who are very sick, and for our loved ones, family & friends who support us and endure the daily up's and down's, that this illness does to us, but also we share our hopes and dreams for a better tomorrow, when we can finally embrace effective treatment and possibly a cure. Thank You!!!!
Just checking in again Jen. I hope you are doing well today.
Hang in there and rest as much as you can!
Once again Jen....thank you and your team for taking on this huge endeavor. Its amazing what can be done when caregivers, family members, patients, and the community pull together. We are so close.... all we need to do is raise 4700.00 each day for the next 16 days and BANG we will have made our goal. I have all the faith in this community that we will get to 200,000.00 by November 22, 2013.
I have had M.E. for 20 years and had little hope until I was introduced to "Canary in a Coal Mine. You have made me feel alive again, and I feel there will be future for me and everyone else who suffers from this devastating disease. Thank you all and Thank You God!
Well, coming up to $125,000. I am such a numbers cruncher. It is remarkable how this effort keeps on bringing in around $5,000 a day. There are moments I think "Oh No....the momentum is fading"...then Boom...an $8,000 day and back on track again. We got "legs". Very professional approach...which is what is desperately needed. Nothing more to say but great work and I will continue to do my part.
Seeing $124,000+ has me in tears. I can't even imagine what you're feeling. I'm SO proud of this community and the caregivers, friends and family... Maybe one day I will really be able to leave this bed for good. Thank you, Jennifer.
Wow! I can't remember the last time I was THIS excited about anything! I was SO jazzed after viewing this I couldn't sleep (even more than usual!) I am SO grateful to you Jennifer, and to everyone involved who is taking this much needed assignment on. I have been sick with M.E. since I was 17...20 very long years. I REALLY believe in this project and am spreading the word. I am personally praying for your health Jennifer and for the success of this project. Major kudos to your hubby for being such a strong support system for you and this cause. Ashes for Beauty...Stacy
I Tweeted the from the Tweet this information to Dr. Gupta, AC360 and Elizabeth Cohen who does health segments all of CNN. Maybe others can choose your favorite news media personalities and tweet them to do a segment about Canary in a Coal Mine kickstarter.
I tripped across your documentary on youtube and watched all the videos and it was very well done. This is my first kickstarter I have backed and although I don't have much money to spare I made certain I passed it on to my friends and family and I contacted CNN AC360. I hope they contact you and do a segment on the program. I really want this project backed as I have ME/CFS and Fibromyalgia.