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A film about life with M.E., the most prevalent and
               devastating disease your doctor has never heard of.
A film about life with ME, the world's most prevalent orphan disease.
A film about life with ME, the world's most prevalent orphan disease.
2,593 backers pledged $212,962 to help bring this project to life.

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    1. Bernard Leong on

      congratulation on hitting the target, now let aim for 220k (20k for kickstater and other fee) so we can have the real 200k

    2. Mark Smith on

      $200,500+ with 36 hours to go. I think everyone who has played a part however large or small should feel proud. But Jennifer and co deserve all our gratitude. Fantastic achievement !

    3. Missing avatar

      Sarah Albert on

      Woo Hoo, we did it! If I could jump for joy right now I would be leqping up past the tree tops on an imaginary trampoline! This is going ro be huge I can feel it!

    4. Missing avatar

      Robert Gawron on

      WOW!! It is so amazing to me that literally in the past 27 hours or so we have raised around $23,000. That is really showing passion and strength and courage and a remarkable "we can get this done" attitude. Amazing...Amazing. Let's celebrate this achievement and applaud Jen, Kiran and Omar for creating the context for us to shine. Having said this there are so many of us out there who cannot communicate on FB or phones...they live in darkness and obscurity. Let's do more for all our brothers and sisters who are unable to do for themselves, who are unaware of this project, who live in constant pain, suffering and loneliness. Let's see how far we can take this over the next day and 1/2.

    5. Missing avatar

      Lilan Patri on

      Oh my God. I just logged on and saw that the pledges passed $200,000!!!

      I am totally crying. Which might be weird, because it's not my movie. But I have been sick for eleven years and I cannot count the hours I have lain in the dark and silence and this film feels so important, and already I am so grateful for what you have done with your preview, Jen and team, because that alone raised such awareness among family friends who until now just did not get it. So many of them donated and learned about ME and saw my reality for what it is... all at the same time. Triple win.

      Blessings upon all your heads, Canaries, and thanks for the terrific Huffington Post piece. What you said about the missing narrative was spot on. You nailed it. I can't wait for the narrative you are going to give us. And please rest. Oh my God, please rest that formidable brain of yours--in between lots of (virtual) jumping around for joy of course!!! Thank you.

    6. Missing avatar

      Donald Dreske on

      Congratulations and thankyou

    7. Onirical Nada on

      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

    8. Sam Ling on

      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!

    9. Lake on

      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!

    10. Kelly Briese on

      I am so happy and proud of you for telling this story. This will change everything! Great work! ;-)

    11. Missing avatar

      Kaye Soulsby on

      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

    12. Missing avatar

      Robert Gawron on

      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.

    13. Missing avatar

      Indy11 on

      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.

    14. Missing avatar

      Robert Gawron on

      Yes...well said Danielle...

    15. Missing avatar

      Danielle Pratt on

      Great idea Penelope! CANADA!

    16. Missing avatar

      Penelope Del Fante on

      Well said Danielle!
      I wonder how many different countries this represents?
      Australia here

    17. Missing avatar

      Danielle Pratt on

      PS 2334 BACKERS AND $5008 TO GO. IF EVERYONE INCREASES THEIR PLEDGE BY $2.15, WE'RE THERE!

    18. Missing avatar

      Danielle Pratt on

      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?

    19. Dawn LInder on

      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.

    20. Elizabeth Milo on

      And gave another shout out on my blog and Facebook. :)
      ElizabethMilo.com

    21. Elizabeth Milo on

      I just added to my pledge. We can do this!

    22. Missing avatar

      Kaye Soulsby on

      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.

    23. Dawn LInder on

      Hi Jen,
      Just increased my pledge by $25.00. Great Idea.
      ((((Bigs Hugs))))

    24. Adrienne Karpov on

      Hi Jen and Kiran,
      I just increased my pledge.
      Xoxo

    25. Missing avatar

      Vanessa B on

      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.

    26. Missing avatar

      Lilly Dus on

      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

    27. Missing avatar

      Robert Gawron on

      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.

    28. Helen Brown on

      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!

    29. Missing avatar

      deleted on

      The author of this comment has been deleted.

    30. Jennifer Brea 2-time creator on

      THANK YOU everyone who increased their pledge by $5, $10, $25 dollars. Every little bit helps – immensely touched by your enthusiasm and generosity!!

    31. Eddy Keuninckx on

      I've added my last Gold Nuggets...

    32. Missing avatar

      Susan Pante on

      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.

    33. Missing avatar

      Robert Gawron on

      Great Sarah....a Backers movement is afoot....

    34. Missing avatar

      Sarah Albert on

      Great idea Robert. I have just doubled my pledge to $10. Anyone want to join me?

    35. Missing avatar

      Robert Gawron on

      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.

    36. Missing avatar

      Penelope Del Fante on

      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!

    37. Omar Wasow on

      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:

      http://www.kickstarter.com/help/faq/backer+questions…

      With gratitude, Omar (Jen's husband)

    38. Missing avatar

      Sarah Albert on

      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

    39. Missing avatar

      Bobby and Tito Patri on

      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

    40. Missing avatar

      Allison Haynes May on

      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.

    41. Missing avatar

      Kaye Soulsby on

      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)

    42. Missing avatar

      Vanessa White on

      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!

    43. Karia Lanken on

      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. :)

    44. Karia Lanken on

      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.

    45. Missing avatar

      Rio Henry on

      Hi Jen,
      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.
      Best,
      Rio

    46. Gina Livingston on

      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~

    47. Gina Livingston on

      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!!!!

    48. Gloria Council on

      Just checking in again Jen. I hope you are doing well today.
      Hang in there and rest as much as you can!

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