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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.
Joey Tuan, Marie-Josée Blier, and 48 more people like this update.

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    1. Missing avatar

      Maureen Goggins on

      I agree with Emily Craven: "Also, I think them understanding the difference between "rare" and "rarely seen" (Great way to put it.) is crucial." Pitch the idea that there is a largely invisible epidemic taking place. Highlight some heros whom have fought for recognition of the illness. (Just trying to think of what might fly with executives.)

    2. Anne LiConti on

      Forgot to mention. 2 oncologists in Norway, Dr's Mella and Fluge, found out by "accident", that a drug called "Rituxan", a drug used for B Cell Non Hodgkins Lymphoma, puts ME patients in remission, up to a 70% success rate. 3rd clinical trial in progress- I would say this is a serious illness! Patients have suffered unecessarily!

    3. Anne LiConti on

      Jenn,
      My cognitive is only allowing me to do this in list format as far as suggestions.

      This fill is about an extreme medically emergency that is being ignored

      -Patients are sick and bedridden over 20 years some since childhood.
      -There have been patients who have seen 200 doctors until a doctor actually believed that they had something medically wrong. (1993 film "Living Hell" as a reference)
      -Early diagnosis non existant because doctors aren't taught this illness.
      -MRI scans show patients to have punctate lesions in the brain causing neuro-cognitive disabilities.
      -A subset of Patients have IGG subclass deficiencies, which is a subset of Primary Immune Deficiency disease.
      -There are no medicines approved by the FDA for this illness except for bandaid therapy to somewhat relieve symtoms such as pain medications, antivirals, vitamin therapy, naturopathic,
      -Ampligen- FDA trial over 20 years- still not approved- patient must pay approximately $2000 a month to get that drug.
      -Nexavir (once known as Kutapressin) is prescribed on an "off label" basis meaning insurance does not cover- cost- $1000 or more depending on the dosage.
      -IV immune globuline- $1000 per infusion, one infusion a week is needed- patients have to pay cash for that therapy.
      -Patients are wiped out financially trying to get well some spending over 6 figures because of the "cash and carry" aspect of the illness.
      -These patients are referred to as "crazy", told it is all in their "heads" because doctors refuse to say "I dont know what this is, it is out of my area of expertise." or refuse to learn how to treat these patients.
      -CDC put a committee together to give M.E,which a disease listed in the WHO database for 40 years, the name "Chronic Fatigue Syndrome" in 1988, that negligence by the CDC has hurt patients to the extent of receiving no medical care and unable to collect disability benefits.
      -CDC also misappropriated funding in 1998 (approx date), no research was done.
      -CDC's negligence- crime to humanity.
      -This could happy to YOU or one of YOUR family members!

    4. Missing avatar

      Elise Pike on

      I cannot offer anything more - tried reading other messages and brain hurts. Jen, believe in yourself. You have all the tools and experience to know what is needed to be said. I believe in you, you are an amazing women and I believe our cause could not be in greater hands. We support you all the way, which ever way. Love and luck, Elise (Melbourne).

    5. Emily Craven on

      I think discussion of the title is important. It wasn't until a friend called it "A film about the industrialization of medicine" that my foggy brain stopped thinking of the Canary as us with our broken immune systems and genetic predisposition living a Coal Mine of chemicals, stress and increasingly mobile viruses. And I started thinking about M.E. as the dead Canary in the Coal Mine of Medicine, with the miners failing to notice. The explanation of the title on the kickstarter page underscores the universal theme of how we as a society and as individuals approach illness. I feel like the universality of themes is what makes this project accessible to a "non-spoonie" audience.

      Also, I think them understanding the difference between "rare" and "rarely seen" (Great way to put it.) is crucial.

      You guys rock! Go kick a**!!

    6. Missing avatar

      Donna Scribner on

      Dear Jen & Kiran,
      What wonderful suggestions, ideas, and comments everyone has. Super excited to see Canary in a Coal Mine succeed and kick butt and win all of its challenges.
      Pitch idea's: The Paley is looking for uniqueness and viability, so the unique part is the POV of the patient. The importance of the film to the patients is so strong that they know they will suffer minutes, hours, days later by participating in it with having there energy being lost. Which equals life stopping for a time. That is how important this documentary is for them to participate in it. Viability: This documentary is useful because it can be shown to doctors who just don't get it. Maybe even shown in medical schools. Knowledge is power. I wonder if you can mention how we end up having to be our own health advocate, to empower ourselves to not rely solely on medical doctors. You can do a bit about how many different treatments (non medical) has just 1 patient tried (and going broke in the process of course). I praise you for your creativity, I wish you all the prayers in the universe, and I thank you for giving us a voice. But most importantly I thank you for your time and energy. Hope and Faith coming your way. God Bless.

    7. Missing avatar

      Jeff Barson on

      Hi Jen
      I am so appreciative of your work so far, and have really high hopes for your project. Since you asked, just a few suggestions. Although as a fellow sufferer, there are many things I would like to see included, it is important to remember that your film in some way entertain the general public. Perhaps describing the history of the disease intermittently throughout the film to somehow have a running narrative that will hold the viewers' interest as to "what happened next" would work. Also, be careful that the music doesn't come across as too maudlin ... Don't want to set a mood of total depression. Also, along that line, although you certainly won't have a "happy ending", maybe a hopeful one, in which a previously isolated and disconnected group of people are now more able to connect, and demand attention due to social media. (eg. your film).
      My 2 cents. Most of all, good luck, and thanks so very much!!!

    8. Missing avatar

      Merry Speece on

      Consider mentioning that in some families more than one member is ill. I know of a family with four ill members, not all these family members connected genetically.

      Mention the decades some people have been ill.

      Many thanks to you two, Jen and Kiran.

    9. Loetta Vann on

      I now a lot of folks experiment and use IV vitamins, but do you think some people who do not know better may thing the symptoms are a result of "experimentation."

      2nd issue, I first became ill on a travel abroad trip to China in 1985 and diagnosed with ME by a Doc in Hong Kong that mentioned we had traveled through an area of "known epidemic" with specific incubation period. Later when I tried to follow up I could not find a paper trail, a few years ago I took papers I could find to docs attending an International Conference about ME. The response received were comments like… interesting; but when I asked, Do you know somebody interested, every one replied: "Franlky, NO". It seems there is money to develop diagnostic tools to sell to docs, and perhaps treatments. But there was not money (interest) available to find out global outbreaks.

    10. Deborah Sawyer on

      I think numbers really tell the story-how many people in the U.S. have this illness, how long many of them have been sick with only a handful of doctors taking a real interest. Almost at the bottom of the N.I.H. list of research money while costing our government much money in lost productivity and disability.Our government says they care but has done very little to back that up with anything meaningful, yes we are alive but not really living. Thank you ladies for your excellent effort, you speak for so many of us without a voice.

    11. alex stiver on

      nothing to add re: additions to your pitch, but do want to throw out to the virtual kickstartosphere: !!!

      this is amazing, and i've been so moved by the support from all corners in the last 14 days. congratulations jen, kiran and all!

    12. Missing avatar

      Virginia Lizotte on

      Dear Jen and Kiran,
      It would be impactful if the world knew about the economic toll this illness takes on society. I ran a successful business for 24 years before being stricken. Also, I have read Laura Hillenbrand's piece in Pain Pathways about her own struggles with this illness. It certainly informs her writing. Her book Unbroken, is a testament to the courage of a pow in WWII, but I see it as more of a testament to her own courage. It would be wonderful if such an articulate person were to be a part of this project.
      For the multitudes of us invisible sufferers, thank you for your efforts.

    13. Beth Hubert on

      Congrats on the project & thank you! I realize it is to be mostly a patient portrait, but there is this controversy over the case definition which completely affects government funding. If you have additional resources available to you, or if they're looking for an additional "angle," then this might be it. Here's a brief overview that just came out: http://shar.es/IFTnF

    14. Blythe Battram on

      I am in tears I am so excited for you and for the exposure this is giving our community! I agree with what others have said - the human element is going to be the most compelling. The before and after footage of patients makes it so real, even for those who are not personally affected. I'd also like to see more family/caregivers' comments. I think that hearing a husband, parent, etc. talking about their experience will give an added perspective to how our lives have changed and the ways that this illness devastates more lives than just our own.

    15. Nicki Strong on

      Jen and Kiran, thank you both so much for this documentary-in-the-making. Please make the point at this pitch and in the film that this is a worldwide/international problem. According to Dr Dan Peterson in his latest talk to Swedish officials http://forums.phoenixrising.me/index.php… , ME/CFS exists in every country where it's been looked for. He also makes the point that "most of the patients are disabled, in contrast to other chronic diseases - HIV, diabetes etc - which are devastating diseases, but people continue to work". We think you could also highlight how it often strikes people in the prime of their lives eg children, teens, young people (like Jessica Taylor), usually healthy, active, happy people prior to this life-destroying disease. We in the UK feel particularly affected by ignorant attitudes and limited in treatments we can access, even privately, since as you know the medical establishment as well as the public have been brainwashed by the "abnormal beliefs and behaviour" illness model of the Wessely school. Our family are desperate this story be told since both our 24 year old son and 22 year old daughter have been struck down by ME since their late teenage years - our son mostly homebound, our daughter at college (just) but mostly room-bound. From your trailers we have every faith you will do a fantastic job of representing the misperceptions, discrimination and injustice of this unbelievable situation worldwide.

    16. Missing avatar

      Dan Becks on

      Many good comments and suggestions below. I would just add that I think your trailer speaks for itself. Maybe if it was tweeked just a bit to emphasize what Andrew Bokelman and Patricia Fero said below -- the huge contrast between your 'healthy' looking and sounding selves, and the toll that filming took on you. I was moved more by the photo of Jen (?) laying on the ground after a day of filming, than by some of the stats and funding comparisons. (By the way, I think a lot more is spent on acne research than male pattern baldness?)

      Anyway, show the dramatic contrasts with the clips you have. Make them FEEL. Move them to tears. That's what people remember, and I think that's what should be emphasized, with the remaining 10-20% talking about numbers, funding, etc..

    17. Missing avatar

      Catherine on

      Jen, I read through some of your tweets and one of them really said it all about my experience, "I think the really hard thing about all this is I wanted to be myself until I died".
      Dealing with the mechanics of being sick, the medical system with a complicated yet obviously serious illness is hilariously ridiculous. For me an additional drama is figuring out how to be this 2.0 version that is missing things I really valued about myself with no obvious way to put work in to get them back.

    18. Missing avatar

      Claire Prideaux on

      To piggy back on some of the other comments, I think it is important to mention that those suffering from this illness understand the economic as well as the personal consequences of this illness and want attention drawn to it not simply for their own sake but for the sake of others around them who might become afflicted and the society as a whole.

    19. Missing avatar

      Cindy Downey on

      Stats/data are very important, and comparisons to attitudes and funding for other illnesses could prove persuasive. As well, the film makers might want to know how people will not only be educated, but also entertained at the same time. Info is often better retained if people can be somewhat entertained, and can personally relate to the stories in the film, book etc. And, an idea for the film content itself: since there is a movement afoot by some to copy the UK policy of providing only Cognitive Behaviour and Graduated Exercise Therapy as treatments, perhaps citing well known athletes who have developed ME would help to dispell the myth that all ME people need is exercise, and counselling to recover. If exercise cures ME, then why isn't it also a preventive measure? One could conclude that if exercise is a cure for ME, then exercise could also prevent ME. Which of course ME people know is a ridiculous premise. However, the concept that all ME people need is exercise and counselling to recover, is a very popular theory gaining hold in many countries despite the lack of studies to prove this theory. Thank you very much for making this film! I wish you all the best with this very worthwhile and important project!

    20. Missing avatar

      Toni Logan on

      It would be so great if you could get Laura Hillenbrand to be in the film, even for a brief moment or two. She is the highest-profile person in the U.S. with CFS/ME that I can think of. I think that would get anyone's attention. Also, there have been movies in the past (The Wedding Gift, with Brenda Blethyn, comes to mind) and a NY Times bestselling book, Osler's Web by journalist/fellow sufferer Hilary Johnson, about CFS/ME. SO WHY ARE WE STILL SO INVISIBLE AFTER 20 OR 30 YEARS? This is the fundamental question that must be answered in the pitch AND in the film. The seriousness and complicated symptoms of the illness itself, that must be documented very well and pitched, too. Best of luck, we know you can do it! Kickstarter has been a big success for your project and I think this is happening for a reason. Don't give up! Thank you Jen and company.

    21. Kathryn Stephens on

      I agree with hard numbers, and would add, media must be made to realize that anyone can get this illness at any minute. Everyone thinks it can't happen to them; it's an "other" thing. That must be changed to the reality that this is an epidemic of severely sick people who were hard working creative people just like them. Physicians quotes are vital. Funding must be addressed in some way, also. If you are going to highlight the IOM contract and how it could set back the research for decades more, that would be governmental exposure that is needed also. Invisibility is one thing; willful harm is quite another.

    22. Missing avatar

      Donna Medlin on

      The blurb on the DocPitch list says it follows a "group" of people who are sick. Since most people think ME is a rare (and suspicious) disease, I would suggest some hard numbers in your pitch. That millions worldwide are afflicted, perhaps including Dr. Klimas' comment about funding for research being a fraction of that for male pattern baldness.

    23. Gloria Council on

      Congratulations! This is all so great. Please try to take care of yourself through all of this!
      We need you, but do not want this to affect your health in a negative way.
      I thank you so much for what you are doing.

    24. Missing avatar

      deleted on

      This user's account has been deleted.

    25. Missing avatar

      Andrew Bokelman on

      I agree with Patricia Fero comment. You should show clips, including the ones you have. Clips about you (before and after). Clips about what you have to do to make this movie. One other patient. Plus Klimas. The clips you have are exceptional. I was pulled in more than any other ME/CFS movie I've seen.

    26. Missing avatar

      Maureen on

      MONEY TALKS! As does lost $... as soon as the FDA/govt. etc. realizes how much CFS/ME is costing the insurance companies in lost productivity the sooner they'll do something. AND MENTION that you were the quickest supported Kickstarter doc. (obviously : ). CONGRATS and THANK-YOU!

    27. Missing avatar

      Carol Carlson on

      This is wonderful news. I never heard of the Paley Center for Media, but that's OK. It sounds really good to be able to "audition." I wish you so much good luck. Don't know much about making a trailer or movie or what tech is used, but I'm sure you have what it takes - on all the important fronts. Love you all. You are fighting for all of us. In my case, it's my daughter!

    28. Abed Notacouch Islam on

      What to mention? Asides from the countless people struggling with their health? That this can not only pave the way for giving them hope, but potentially brighten their social lives as they'd no longer have to be invisible, nor their issues simply "all in your head". God only knows how many people are in complete denial & without support to boot. Just putting them on the map could be like granting them a new life. This may not lead to a physical recovery soon, but in the very least perhaps people won't have to feel as if they're stuck, isolated to living in/out of their own cranium.

      This film--not to trivialize the other finalists--seems to me to have a far greater and immediate reach, a far greater impact, one that will be much-appreciated.

    29. Patricia Fero on

      For the Paley Center, I think you should include 1...a clip about the technology you use. IT IS about use of MEDIA...an I CAN DO thing. 2. Clips of mixed pre illness, illness self, Nancy Klimas and MS with the blue scarf with emphasis on invisibility. 3. This film is so good because of the insertion of historical clips. These create a common understanding with the viewer...it is a hook!

    30. Missing avatar

      Lauren on

      Stating that many people with various invisible diseases (I have Fibro and ME/CFS) are DEPENDING and have been WAITING for a documentary like this to inform the medical community and the public.

      And just a bit of advice since I have been dealing with these illnesses for close to 40 years, move out of the Tri-State area to the SW. I did and it helped a LOT. No more pollution, pollen, humidity, rapid changes in air pressure, wet cold or mold.

      Thanks for your hard work! It is very much appreciated and we needed someone like you to do this for all of us.

    31. Jennifer Brea 2-time creator on

      Hi Marie-Josee. Thanks for your comment. We are actually working with a women in Toronto, so it's likely there will be at least one Canadian in the film!

    32. Missing avatar

      Marie-Josée Blier on

      Hello, I do not know how long this film will last. But it would be nice to have some ME patients from Canada to participate. Probably follow someone during half a day. It may be to long but this is just a suggestion. In Montréal, it would be nice to have someone beeing interviewed.

      Thank you.