I want to thank everyone who has given us such a positive response about the Blue Ribbon film so far. The fundraising had a strong week. We're very excited about the number of people who have reached out to us and helped get the word out. We're getting a lot of interest all over the world, from Australia to Ireland to Canada. In terms of the non-English-speaking world, I was happy to get our first request for translation into another language. In addition to the funding, people have offered meals, beds, connections, advice, talents, and many other gifts that will make the production a success. The USA Today College article I wrote was the most popular piece that website published for the entire week. With 940 likes and counting, it doubled the popularity of my previous best article, which was also about this illness. Admittedly I am young, but in my time at Newsweek and at USA Today, I have never seen this type of profound rallying effect for anything else I've written.
Here is a link to my USA Today piece announcing the film:
http://www.usatodayeducate.com/stag...-the-hidden-story-of-chronic-fatigue-syndrome
Here's a link to our Kickstarter page.
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
We're excited about the potential of crowdfunding for this particular documentary. It essentially will offer collective ownership of the film to this entire community. Essentially, if people are willing to pledge money or other assets, they should be able to have input into the production process as a shareholder would (and if you pledge $1,000, you literally do become a producer). We recognize there is great wisdom in crowds, and we want to be a vehicle for that wisdom. Crowdfunding through Kickstarter represents that unique opportunity for the community to express its wishes. As Nicole told me today, "We aren't making the film we want. We are making the film the community needs."
With that in mind I'd like to offer a few of my thoughts on how we can use this piece of art to accomplish specific cultural, political, or scientific ends (I have in mind things like the OMI-MERIT list or the CFSAC recommendations). Even more than that, the most important thing we hope to do is help gather respect to make each person's daily life easier. We want to make it easier to explain this illness.
The film will be for the general public, but will have specific targets picked out within that subset. We're looking to sway thought leaders. There will be specific portions meant to challenge or inspire doctors, researchers, journalists, politicians, artists, insurers, social workers, and members of faith communities.
Doctors/Researchers: We want to stage screenings of the film at top medical schools like Harvard and Duke. Soon, we will also formally release a proposal for creating a $50,000 medical fellowship that would fund ten 1st year medical students for an 8-week summer internship at places like OMI, Simmaron, or the Pacific Fatigue Lab. The next Dan Peterson might be entering medical school this year and we could snag him early.
Journalists: We want to motivate and educate more journalists to discuss this topic. I don't see a fellowship working in this situation, but we're talking with the University of Georgia's Medical Journalism Masters Program to explore possibilities. Most journalism schools have medical certificates. We have to educate students in the intricacies of the illness and show them how to do more. Imagine what would happen if we had five Llewellyn Kings.
Artists: Nicole worked in Hollywood and in feature films. Many of her best professional connections are there. The biggest thing she and I talk about in this realm is the all-important goal of attracting a celebrity spokesperson in the mold of Michael J. Fox for Parkinson's or Jerry Lee Lewis for MDA.
Social Workers: I can't stop thinking about this interview with Harvard's Paul Farmer. http://www.thedailybeast.com/articles/2013/05/10/paul-farmer-the-big-idea-on-health-care.html. He argues that our medical system is terrible when treating chronic illnesses and that working with community health workers is the best way to fix that. "Good research linked to care delivery." I think it's very important for this film to be a part of that discourse. People have to realized that this illness requires a whole community continually supporting the patient.
Politicians: Just as Nicole is comfortable in Hollywood, I am most comfortable professionally on Capitol Hill. I lived there for six months and I worked a block from the White House at Newsweek. I also worked for a U.S. Congressman. I had a great conversation with a former congressional chief of staff recently about how to raise the profile for this illness on Capitol Hill. With a great film displaying the suffering of severe ME patients, I think the film might help move the conversation.
Members of Faith Communities: I talked with an ME patient who said that she had created an online sign-up list for her Sunday School class to bring her meals. We would like for there to be an important component in the film showing how faith communities can step up.
In general, this can't just be a film that gets people excited. We have to offer immediate tangible ways that people can step up and we want to make it as easy as possible for them.
I know I've said a lot but I did want to get our thoughts out in the open so that we can work with people to revise, replace, and strengthen what's important here. Please feel free to engage with us and make this community-driven project as strong and wise as it possibly can be.
Here is a link to my USA Today piece announcing the film:
http://www.usatodayeducate.com/stag...-the-hidden-story-of-chronic-fatigue-syndrome
Here's a link to our Kickstarter page.
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
We're excited about the potential of crowdfunding for this particular documentary. It essentially will offer collective ownership of the film to this entire community. Essentially, if people are willing to pledge money or other assets, they should be able to have input into the production process as a shareholder would (and if you pledge $1,000, you literally do become a producer). We recognize there is great wisdom in crowds, and we want to be a vehicle for that wisdom. Crowdfunding through Kickstarter represents that unique opportunity for the community to express its wishes. As Nicole told me today, "We aren't making the film we want. We are making the film the community needs."
With that in mind I'd like to offer a few of my thoughts on how we can use this piece of art to accomplish specific cultural, political, or scientific ends (I have in mind things like the OMI-MERIT list or the CFSAC recommendations). Even more than that, the most important thing we hope to do is help gather respect to make each person's daily life easier. We want to make it easier to explain this illness.
The film will be for the general public, but will have specific targets picked out within that subset. We're looking to sway thought leaders. There will be specific portions meant to challenge or inspire doctors, researchers, journalists, politicians, artists, insurers, social workers, and members of faith communities.
Doctors/Researchers: We want to stage screenings of the film at top medical schools like Harvard and Duke. Soon, we will also formally release a proposal for creating a $50,000 medical fellowship that would fund ten 1st year medical students for an 8-week summer internship at places like OMI, Simmaron, or the Pacific Fatigue Lab. The next Dan Peterson might be entering medical school this year and we could snag him early.
Journalists: We want to motivate and educate more journalists to discuss this topic. I don't see a fellowship working in this situation, but we're talking with the University of Georgia's Medical Journalism Masters Program to explore possibilities. Most journalism schools have medical certificates. We have to educate students in the intricacies of the illness and show them how to do more. Imagine what would happen if we had five Llewellyn Kings.
Artists: Nicole worked in Hollywood and in feature films. Many of her best professional connections are there. The biggest thing she and I talk about in this realm is the all-important goal of attracting a celebrity spokesperson in the mold of Michael J. Fox for Parkinson's or Jerry Lee Lewis for MDA.
Social Workers: I can't stop thinking about this interview with Harvard's Paul Farmer. http://www.thedailybeast.com/articles/2013/05/10/paul-farmer-the-big-idea-on-health-care.html. He argues that our medical system is terrible when treating chronic illnesses and that working with community health workers is the best way to fix that. "Good research linked to care delivery." I think it's very important for this film to be a part of that discourse. People have to realized that this illness requires a whole community continually supporting the patient.
Politicians: Just as Nicole is comfortable in Hollywood, I am most comfortable professionally on Capitol Hill. I lived there for six months and I worked a block from the White House at Newsweek. I also worked for a U.S. Congressman. I had a great conversation with a former congressional chief of staff recently about how to raise the profile for this illness on Capitol Hill. With a great film displaying the suffering of severe ME patients, I think the film might help move the conversation.
Members of Faith Communities: I talked with an ME patient who said that she had created an online sign-up list for her Sunday School class to bring her meals. We would like for there to be an important component in the film showing how faith communities can step up.
In general, this can't just be a film that gets people excited. We have to offer immediate tangible ways that people can step up and we want to make it as easy as possible for them.
I know I've said a lot but I did want to get our thoughts out in the open so that we can work with people to revise, replace, and strengthen what's important here. Please feel free to engage with us and make this community-driven project as strong and wise as it possibly can be.
). The same issue can occur with patients. Some have been sick for so long and have gotten use to using the term CFS, when they may actually have ME. And some other patients hate the term CFS and prefer to use ME in its place. Language is so important, esp when you are making a film aimed at those not familiar with this whole thing.
