Use this space to cheer the creator along, and talk to your fellow backers.
Have a question?
Before I can comment on changing the name... I was under the impression that I have had CFS, as I have lived with Fibromyalgia for over a decade. The rheumatologists always called CFS and Fibromyalgia the same thing.... Is it????? Please email me at email@example.com if you have the answer. I have recovered well over 90%, but do have the seasonal set-backs, and feel it for over a week, when I "over-do" things. Of course, my sense of having overdone something is vastly different than my home renovator/builder husband, and most others.
Great interviews and videos with Al Jazeera, Jen and Omar--thank you for personally speaking up with your story about 'our collective severely LIMITED lives.' Yes, everthing we do 'do' IS a PUSH . . . yes, even brushing our teeth is 'wearing.' And, yes, we feel ILL all day every day; SUCH a devastation to have EVERY aspect of our lives stolen away from us because we had the rotten circumstance of landing this 'neglected' 'hidden' 'ignored' SERIOUS BIOLOGICAL disease of ME/CFS. Definite problems with the 'name'--regardless, WE so badly need a FIX to this horrid disease--AND we need a STOP to the spread of the disease--it IS spreading locally and globally!
I know it is a big job in itself - but I am just wondering when folks might expect to receive their rewards?
Merry Christmas and Happy Holidays everyone!
Thank you, Susan, for your sweet note, and thank you everyone, for all of your comments! I am sad and feel a little guilty about my disappearing act, but I am still very much in recovery. I am not yet as well as I was on October 20th, two days before the launch of our Kickstarter campaign. We all know that's the nature of this beast! I am, however, making slow but steady progress and continuing to work: I am deep in planning mode for the beginning of production this spring. Some exciting things are happening behind the scenes, which I look forward to unveiling in the coming months.
Until then, much love to you all and best wishes for a Happy and Health(ier) New Year!
Hope that you are taking good care of yourself, Jen; your body will be really paying the price for that HUGE push with the funding project for Canary in a Coal Mine. Wishing you a very Merry Christmas and great things to come for the New Year 2014!! Goooo, Canaries, goooo!!!
Hi Danette, you can message me at the Phoenix Rising CFS site. My name is the same there...Indy11. Thanks!
Indy11, no I'm not on any sites. Which site are you on I can try to find you. I'm not that good with technology, so bare with me! Hope all is going well, and you have a good thanksgiving. Talk to you soon I hope. (:
Danette, that would be great...ru on any of the CFS sites? I'll PM u there...
Amazon is holding up my payment. Credit card is fine. I have already called them (I am in Australia!) So far I have wasted over an hour of my time. Hopefully the payment will go through. If I cannot get this sorted is there another option for payment??
Jennifer, thank you so much for doing this! I'm 28 years old and have been sick with ME for the past two years. It's difficult to impart how severely this illness affects your life. When I first became ill I was ambitious, independent and gearing up to go to graduate school. I now live with my parents and cannot do more than work at temporary, light-office jobs. And the worst part is that I only have a mild form of this illness; I cannot imagine how much worse it must be for those severely affected. In my case, I have seen natural improvement over the past two years and feel fairly confident that I will at some point be fully recovered. But I realize that I am lucky, and for too many people the possibility of a full recovery always seems to remain a dream for tomorrow or a destination perpetually moving beyond the horizon.
I hope that this film becomes the first true voice for the voiceless millions across the globe who have been robbed of their lives by ME. Thank you for being brave and strong enough to stand up for those who are too sick to do so themselves, and for shining a light on the lives of "the disappeared" who have been forced to fall out of society by this illness. The world is vast, but individual people can change it with their efforts. I hope that this will be one of those times. In fact, I think it will.
Go get 'em.
Jen(and Omar), so excited for you in creating this revolution and happy to be a part of this amazing community. I was sobbing while watching your thank you video on my work PC- you are an inspiration to us all. Hugs, Alice
Love the celebratory atmosphere of the virtual on-line Canary in a Coal Mine Wrap Weekend Party---sparkly candle and all!! Here we go!! Thanks SOOOOO much Jen, Kiran and also to our MANY supporters!!!
Hi Indy11 I'd love to speak with you sometime about what you're going through as do I go through the same thing. Please try and get in touch with me somehow. Thanks so much! We all need someone who listens and cares!
Just got up and looked at the site AGAIN! So excited and hopeful to see where this goes- to the moon I hope. I've been reading everyone's comments and honestly I cry. To read and hear those people go thru the same things I go thru is heartbreaking. I've lived with this "life robbing disease" for 5 yrs in December. To hear some people have lived with it for 20+yrs is daunting and scary to say the least. I choose to stay positive for as long as I can cause I'm sure I'll need it, I honestly from the bottom of my exhausted soul, think this is a GREAT way to get the ball rolling so to speak. To all you out there who are reading this- don't give up hope EVER!!!! This disease eats you up & spits you out and takes a lot of precious times and moments from you. The one thing it can NEVER take away from me is my attitude and who I am as a person. We WILL fight this disease, and start to take our lives back- even if it's piece by piece. Congratulations to all for everything, it's time to run with the ball!!!!! Xoxo
Thank you, thank you for all you have done and accomplished for the ME community! You are truly an amazing person, Jen!
Thank you for giving us a chance to tell our story and to be able to share with one another!
Congratulations, Jen! What you've been able to accomplish is astounding. When I saw your article on my ABC News app about a week ago, I pulled my car over and cried. Maybe, just maybe, there will finally be some justice found for the people who suffer from the different nuances of this condition.
Teresa, I read your message below and I didn't want to be a downer...but I think I feel something similar to you. I want to believe this movie will change things, and I really hope it does. After 15 years of having the crap beat out of me by the illness to then -- only to feel much better from a ridiculous amount of money and hard work, have the crap beat out of me financially and then emotionally by nearly every single person I know is beyond too much. I literally have to hide the fact that I deal with this at all to my new employer. I can't be truly authentic because this illness is still unpredictable and I have to buy myself carefully-explained absences, if needed. It's very twisted and hidden. I hate it. And I really hope this movie can catapult us in the right direction.
I'm inspired that it has united this community. We are all so sick of being sick...and dismissed on top of it. Isn't just being sick enough? Is the shunning really necessary? Shouldn't we be lifted up by others at any given opportunity, instead of the opposite? Realistically though, there's infighting even within this community as people debate over the legitimacy treatments, doctors, if you got better then you never really had CFS/ME etc. We'll likely only ever get there working together and hopefully this campaign is only the beginning.
I saw this on a magnet tonight and I think it sums this situation up about as well as anything can: "I can explain it to you, but I can't understand it for you." The $212,962 question is.......how do we explain it and get understood too??
Thanks again, Jen. You're my newest hero.
Wow! I have been so involved following the funding progress, the updates and the comments. It has been for me a really uplifting experience, and helped me to feel part of a community of people who understand and support each other. Thank you so much Jen and Kiran. Jen please take care of yourself and rest up now! Can't wait for the film.....!
Thank you for making this film. It means a lot to a lot of people, those with ME/CFS and those closest to them who have been family and friends who understand and want the world to see how difficult life with ME/CFS can be. I pledged my part in honour of my two good friends, Ricky and Alison, who have been deeply affected by ME/CFS for many years. But I am also thinking of each and every one of you who have been touched by ME/CFS when I made this pledge, too.
Thank you Jennifer, for bringing your story to the screen. Please take care, and pace yourself (but you know that)! Thanks also to Kiran. You both did an excellent job on the trailer. I look forward to hearing more updates when you have them.
Thank you so much for all of the hard work, dedication and bravery you are pouring into this project! It gives me hope that change is gonna come... :) Thrilled to be able to be a part of something with the potential to do so much for so many. Thank you for your vision... for your time and precious energy... and thank you for your courage. I am unable to express how much good it does my heart to know this will be a reality, and my hope and prayer is that strength, love and good health will be with you through every step of the journey.
I want to be excited about this milestone but after 20+ years of hell on earth with this disease I have forgotten how to have hope. I want things to change for us but I can't break through this box of despair yet. Thank you for giving hope a try and please bring this ugly disease to everyone's attention, as I know you will! I want to feel hope again!
I watched your online question/answer yesterday. What an uplifting experience with some fantastic ideas of how to present to the doctors what is really going on. More than that, giving us hope that this will draw even one caring researcher out of the woodwork that has a heart. Your husband and yourself speaking up about your how your relationship has been strengthened also left me with more peace of mind and not feeling like such a burden for my husband. And to find such a wonderful friend to actually take the time to film, oh how God is bestowing blessings through you for all of us!
You have managed to unite and excite the ME/CFS community. You've given us a reason to be hopeful again. I am so thrilled to support this project, and from the bottom of my heart thank you for all your hard work and courage! Your story has really touched me, and I empathize with your struggles. In Feb. it will be 7 years since I got sick at age 23, and I too know how it feels to just not be able to accept that you will never recover. All the best, and congratulations on meeting and exceeding the 200k goal!!
Congratulations! So amazing to see what this fantastic community can do.
Hi Jen. I had tears in my eyes and a big smile on my face when I watched your video telling us all that the financial goal had been reached, but most of all I felt tremendous waves of love toward you and our community. Having become ill during my first term at Oxford only to push on and push on until I could push no more, I have spent the past twenty years trying many different treatments to try and recover from what has been a severe form of the illness. Slowly I am finally finding treatments that are helping and I hope that gives inspiration to others. I've never felt as compelled to be a part of something as I do with your project, Jen. You are a remarkable woman with a truly winning smile and I thank you deeply for what you have and continue to set in motion. I send happiness and a good few more waves of love your way and to others in this community. Clare.x
Twenty-twenty-twenty-four hour to go... ! Anyone else have the Ramones in their head?
That was fun!
'It takes two to speak truth - one to speak, and another to hear' Henry David Thoreau
This amazing project will be the voice of truth that will speak for so many of us. But as equally powerful, you are acting as the listener for us too, the project is proof that our voices are being both heard and validated, that we are speaking the truth - so much more important than many can ever comprehend. All we really need is to be believed.
I have lived with M.E. For 20 years and I can't tell you how incredibly grateful I am to you! In the past few years, projects like this and websites such as The Hummingbirds' Foundation and The Nightingale Research Foundation have been a beacon of light, giving me great hope for our future.
Congratulations, you're simply amazing!!!
Just woke up to $200,895.00 and I burst into laughter and tears. I viewed your update Jen and cried again. I cant wait for this afternoon so we can all hang out together and CELEBRATE! I knew we could do it because we are all winner's and I am giving a big shout out to God for standing by us. ((((BIG HUGS FOR YOU JEN)))))
congratulation on hitting the target, now let aim for 220k (20k for kickstater and other fee) so we can have the real 200k
$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 !
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!
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.
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.
Congratulations and thankyou
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!