For Koivy's question: New to the system, still trying to work things out. Hopefully responding this way works as planned (and the Reddit AMA really destroyed me too!):
1. There are important differences between ME and CFS, but I'm not convinced this is the time to dwell on them. I hope the following analogy will be meaningful:
All American black people shared the same civil rights goals in the 1960s. However black Muslims of the Nation of Islam were strong advocates for separatism. They changed their names to shake off the shackles of the colonial masters. They wrote proud books on black history. They wanted an independent black state and they sought to deliberately separate themselves from whites and non-Muslims. However, black Christians didn't do this. They joined with white people and worked to integrate themselves, not separate themselves. The black church was the center of power for the civil rights movement, while black Muslims were essentially sidelined from the civil rights movement. Now, of course, Muslims and Christians are distinctly different, but in this context they had exactly the same goal. We should be aware of our differences, but not so caught up on them that they should divide us. We all share the same goal and should fight to work together. Our community is stronger with the voices of many.
2. The most important language is the language of showing visual suffering. The people we need to persuade are not well-versed in the subject; I don't think they need to be thinking about semantic differences. They need to SEE the magnitude of suffering, of how this suffering seeps into our souls. I often think the best way of defining chronic illnesses like this is in how they force us to defer our dreams, to never get to live the life we intended. Emotions and images will stick with the viewer far more effectively.
Take the Academy Award-winning documentary on charter schools, Waiting for Superman. I can't recall details from the film about high school drop-out rates. The biggest thing I remember is kids at the end either jumping for joy or crying depending on whether they were accepted to a charter school or not. It was that important to them and their families: they knew the school would determine so much about their future lives. The biggest thing I want to achieve in this film is to provide a window into those seminal moments of emotional transcendence. That's what we want viewers to remember.
If I was teaching a class to medical students, I'd have them memorize definitions. If I wanted to pull heartstrings and move mountains, I would tell stories.
3. Ways of helping: as simple as it sounds, it's really important to share the Kickstarter or articles about the project on social media; re-tweet things, like them on Facebook, also commenting on Facebook statuses helps propel things in the search algorithms. People have been absolutely excellent about offering warm beds, warm meals, and warm showers to the production crew all the way from Charlotte to San Francisco. We're so grateful for that. I recently wrote that in my journalistic experience, the ME/CFS community is one of the most organized and passionate groups I've come across. If we can find ways to train that avalanche of passion onto a single television network or onto a single politician, I think we should work on that. A lot of things are hard for us to really predict and require highly specific knowledge. For instance, someone wanted to be able to translate a portion of the finished doc into Swedish. It's fine by us. But we have no idea how to do it, so we'd be glad to let the family do that on their own. We really want individual patients to think really deeply about what highly specific skills they have and use their God-given talents to add to this. For instance, we had a great request from a young girl with ME/CFS who is an avid harpist and would like to contribute musical recordings to the film. That's like translating into Swedish: we could never even predict that a harp soundtrack could be a possibility, but now it could be. So we want people to feel free to contact us about how they'd like to help.
4. Regarding transparency on interview questions: we've talked a lot about using Twitter or some other method to allow people to submit questions. Two heads are better than one, and 6,000 are even better than two. At the same time, I will note that with most interviews I do or that any journalist does, at least 30% of the questions will simply be part of an ongoing conversation, and will organically develop during the interview. Just as a general note, sometimes the most basic questions are the best. One of my favorite interviewers, Charlie Rose, recently said something like, "If a question isn't short enough to be asked in a tweet, it's probably not worth asking."
1. There are important differences between ME and CFS, but I'm not convinced this is the time to dwell on them. I hope the following analogy will be meaningful:
All American black people shared the same civil rights goals in the 1960s. However black Muslims of the Nation of Islam were strong advocates for separatism. They changed their names to shake off the shackles of the colonial masters. They wrote proud books on black history. They wanted an independent black state and they sought to deliberately separate themselves from whites and non-Muslims. However, black Christians didn't do this. They joined with white people and worked to integrate themselves, not separate themselves. The black church was the center of power for the civil rights movement, while black Muslims were essentially sidelined from the civil rights movement. Now, of course, Muslims and Christians are distinctly different, but in this context they had exactly the same goal. We should be aware of our differences, but not so caught up on them that they should divide us. We all share the same goal and should fight to work together. Our community is stronger with the voices of many.
2. The most important language is the language of showing visual suffering. The people we need to persuade are not well-versed in the subject; I don't think they need to be thinking about semantic differences. They need to SEE the magnitude of suffering, of how this suffering seeps into our souls. I often think the best way of defining chronic illnesses like this is in how they force us to defer our dreams, to never get to live the life we intended. Emotions and images will stick with the viewer far more effectively.
Take the Academy Award-winning documentary on charter schools, Waiting for Superman. I can't recall details from the film about high school drop-out rates. The biggest thing I remember is kids at the end either jumping for joy or crying depending on whether they were accepted to a charter school or not. It was that important to them and their families: they knew the school would determine so much about their future lives. The biggest thing I want to achieve in this film is to provide a window into those seminal moments of emotional transcendence. That's what we want viewers to remember.
If I was teaching a class to medical students, I'd have them memorize definitions. If I wanted to pull heartstrings and move mountains, I would tell stories.
3. Ways of helping: as simple as it sounds, it's really important to share the Kickstarter or articles about the project on social media; re-tweet things, like them on Facebook, also commenting on Facebook statuses helps propel things in the search algorithms. People have been absolutely excellent about offering warm beds, warm meals, and warm showers to the production crew all the way from Charlotte to San Francisco. We're so grateful for that. I recently wrote that in my journalistic experience, the ME/CFS community is one of the most organized and passionate groups I've come across. If we can find ways to train that avalanche of passion onto a single television network or onto a single politician, I think we should work on that. A lot of things are hard for us to really predict and require highly specific knowledge. For instance, someone wanted to be able to translate a portion of the finished doc into Swedish. It's fine by us. But we have no idea how to do it, so we'd be glad to let the family do that on their own. We really want individual patients to think really deeply about what highly specific skills they have and use their God-given talents to add to this. For instance, we had a great request from a young girl with ME/CFS who is an avid harpist and would like to contribute musical recordings to the film. That's like translating into Swedish: we could never even predict that a harp soundtrack could be a possibility, but now it could be. So we want people to feel free to contact us about how they'd like to help.
4. Regarding transparency on interview questions: we've talked a lot about using Twitter or some other method to allow people to submit questions. Two heads are better than one, and 6,000 are even better than two. At the same time, I will note that with most interviews I do or that any journalist does, at least 30% of the questions will simply be part of an ongoing conversation, and will organically develop during the interview. Just as a general note, sometimes the most basic questions are the best. One of my favorite interviewers, Charlie Rose, recently said something like, "If a question isn't short enough to be asked in a tweet, it's probably not worth asking."
