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Thank you so very much for you recent letter! It perfectly explained the festival viewing limitation process and constraints you are under until the film goes public. I am perfectly content waiting patiently until you are free to release "Unrest". More importantly, my greater concern is that you soon feel some significant improvement, whatever that may be, and release from the grips of this potent ME illness.
I'm so sorry that you've been stricken by this dismissed illness: however, I can't imagine anyone else being as graceful, courageous and verbally articulate as you've been through your Ted Talks and correspondence about the film from when it commenced up through today You and your husband, Omar, are my personal heroes this year. What a blessing that you've had each other through this complex illness and documentary-making-venture. You two are remarkable individuals; and, surely, your finished piece will be a gift to many once they view it.
I hope "Unrest" will rattle and rouse the medical industry to put more dollars into research for ME medication and cures.
S. E. Greenwood
Hi Alana – if by activity you mean the updates, all backers should have received these updates in their inboxes.
We'll definitely send out an update to all backers re: the switch to Mailchimp, but if you gave to the campaign, you do not need to sign up in order to continue receiving updates. Everyone was automatically added to the new system. The most important thing is to make sure of is that email@example.com and firstname.lastname@example.org are added to your address book to make sure these aren't going into your trash.
You can also search your inbox for our latest updates to make sure they aren't going into "trash" or (if you use gmail) "updates":
Help us build Canary's impact campaign: http://bit.ly/1T4AFlB
A waterfall of love at Good Pitch New York: http://bit.ly/1l0oCqz
I came to see what was happening and I'm happy to see activity on the page. However, I haven't been getting the updates either. I signed up for the updates directly from the website, but I wasn't aware (as I'm sure many other supporters weren't) that we were to go to sign up for those updates. It might be worth it to send out a message to let people know for the future?
Hi everyone, if you have any specific questions about your rewards, please email email@example.com
Anyone reading this, please check the "updates" tab as we were sending frequent updates. This fall we switched to sending updates to our supporters via our email list. Emails will come from firstname.lastname@example.org or you can try signing up again at our website, canaryinacoalminefilm.com
Hi Tamara. Drop me an email at email@example.com and we can try to see what is happening. We have sent 42 updates since the launch of the campaign. They may be getting stuck in your spam box. You can also follow the film at FB.com/canaryfilm or at our website http://canaryinacoalminefilm.com
When do we get to see the film, get a copy of it, talk to whomever, etc.? I thought I would be getting updates in my email through this process. I haven't.
Hey- I hope everything is going well. I'm so excited to soon be seeing this film!
Jen did you know the CDC changed the name? It's now considered a disease, thank god. It's SEID or ( systemic exertion intolerance disease ) yayyyyyyy!!!!!!!!!!!
Where is progress at Jen? Is there any idea of a scheduled release date?
Any new updates? It's been pretty quiet for a while now..
Jennifer, PS I hope you have time or have seen a movie from '99... MUMFORD... with CFS patient (Hope Davis) as character and produced by DISNEY. Wish they'd do a MUMFORD RETURNS. marcie myers
Hi! Just wondering how things are going with you and the project.... haven't seen anything since the Kickstarter project ended. Wishing you and us much good things. Marcie Butler Myers 4/13/2014
I am praying so hard for anything that can be done for people living with ME. also that you will get all the help you need because we all know just how hard it is to just get through a day, let alone a having any kind of life or taking on anything extra. I have had 25 years not only coping with ME but also the poverty that goes with it. I have lost everything the average person expects in their life. Job, career, opportunity, self esteem, social life, home, holidays, pride, ability to exercise, influence, choices..................I have had gains, humility, empathy, compassion, tolerance, but they dont pay the bills. So, on top of all that life becomes very stressful and you bounce from one challenge right into another and there is just no way you can escape the stresses that wipe you out each time they arrive. On top of all that to be perceived as one with nothing that much wrong is absolutely unacceptable.
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 firstname.lastname@example.org 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