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Come Discuss The Blue Ribbon film (with Ryan Prior)

Discussion in 'General ME/CFS News' started by RyanPrior, Jun 16, 2013.

  1. RyanPrior

    RyanPrior

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    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."
    Sasha, Valentijn and Firestormm like this.
  2. RyanPrior

    RyanPrior

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    Regarding the "looking" good, we've talked about interviewing people laying down or with wheelchairs or walkers next to them (or sitting in wheelchairs). If patients require feeding tubes or oxygen tanks, we can show that. If they are planning an outing or are simply at home, we can follow them for a few hours and show unique lifestyle adaptations and struggles.
    ukxmrv, Svenja, Sasha and 2 others like this.
  3. Sasha

    Sasha Fine, thank you

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    I think it's important to show that transition, those two faces of the disease, otherwise the audience might go away thinking that the people they've seen lying in bed looking like death have the real illness and those they meet on the street looking fine aren't sick - whereas in fact, they're usually the same person.

    Jennie Spotila -hi, jspotila! - bravely posted a video of herself in a crash, looking ill in bed, after we all saw her on the livestream of the FDA meeting looking lively, speaking articulately and effectively, and beautifully made-up with a pretty dress and nicely-styled hair. I was weirdly shocked to see another person crashed, even though it's what I would see in a mirror! I think it would be powerful for an ME audience.

    Here's her post, with before-and-after pic/video:

    http://www.occupycfs.com/2013/04/29/what-a-crash-looks-like/
    Koivy, jspotila, Svenja and 1 other person like this.
  4. Sasha

    Sasha Fine, thank you

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    Do you know how widely distributed Voices from the Shadows has been, Firestormm? I must confess I've never seen it because it sounds so distressing to watch. When I heard about Ryan's project I thought perhaps I ought to check it out and watched the trailer on YouTube - it has a warning that young PWME shouldn't watch it because it would be too upsetting for them. You have to pay to buy the film on DVD so you either pay up and take the risk that you won't be able to stand it after ten minutes or you don't watch it at all.

    I wonder if its potentially distressing nature, the fact that you've got to pay for it, the fact that it's not available except via the people who made it (it's not on Amazon) have been barriers to its being more widely seen than it has.

    My understanding is that Ryan isn't doing a training film for medics - he's doing a documentary about the social injustice scandal that we're undergoing, but he wants medics to see it, among a wider audience, because they're both part of the problem and its potential solution.

    I wonder if there's a tension between the wish to fund medics through short internships with our ME specialists (a great idea) and being able to get wide distribution of the movie - that is, paid-for versus free on YouTube (someone posted a similar point on the Kickstarter discussion). Wider distribution could have huge political benefits for us.

    $50,000 to fund 10 internships is a fantastic idea. Is it an idea that we ought to be fundraising for as a community, rather than this movie having to carry a fundraising burden that restricts its distribution? We've seen Norway - 5 million people - plus a few of the rest of us raise $430,000 (£780,000, 330,000 Euros) in 90 days. I think a lot of that had to do with the goal being a specific target, not just the usual request to donate to a charity's bottomless pit. I think people in the US could raise $50,000 rather quickly if there was someone to organise that project.

    Someone sent Llewellyn King's piece out via Co-cure this morning and I highly recommend it. It's one of his most powerful pieces. Unfortunately I don't think he mentioned that Ryan needs another $6,000 to make the film and that people could donate! :confused:
    Svenja likes this.
  5. Sasha

    Sasha Fine, thank you

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    Oh! He hasn't got $6,000 to go, he's raised $7,725 as of this morning so has another $4,275.

    Let's give him some more $$$! I've given him $25, which happily gets me a free DVD of the movie as a sponsor at that level.

    On Kickstarter you get your money back if the target isn't reached within the specified period so there's no risk.
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  6. Bob

    Bob

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    I haven't watched Voices from the Shadows either, for the same reason...
    It's looks so sad, and I thought I'd probably weep all the way through it!
    But by all accounts that I've read, it's an excellent film.
    Voices from the Shadows has been shown to various parliamentarians (and others outside the ME community), and to good effect, from what I've heard.
    I'm pretty sure that people have said that it transformed their understanding of ME and the lives of ME patients.
    Unfortunately, I didn't keep a note of any webpages, so I can't provide any links, and I can't remember who has said it influenced them.

    Anyway, my point is that films are a good way to reach people who wouldn't otherwise come into contact with our world.
    Firestormm likes this.
  7. Sasha

    Sasha Fine, thank you

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    I suspect a lot of us avoid material like that for the same reason - we're living it, or we might end up like it, and we don't want to see it. Ryan's film, on the other hand, looks as though it's about our fight for recognition and will be full of hope and anger and conflict - a sort of ME 'Supersize Me' or something! I can't wait to see it.

    I'm sure VftS is effective on those people who see it - I just wonder if the distribution method, among other things, has severely limited those numbers.
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  8. Firestormm

    Firestormm Guest

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    Only replying to endorse what Bob said and to add a link or two or three that might help. And I believe there was a screening in Westminster but I can't locate it at the moment.

    Also a little clarity: thanks Sasha, I did get a bit muddled with Ryan's intentions for his film. Trouble with trying to do something else whilst taking a break and reading another thing - multi-tasking don't work now but still I persevere :)

    I think Ryan's film would complement any medical training that occurs as a result of the fundraising subsequently. Indeed, all medical training should include some 'exposure' to real life circumstance in my view. Of course they can cut-up a cadaver but how much 'living with a chronic condition' are they exposed to? So a film could be useful in this respect also.

    I loved that Kickstart trailer btw. And the narrative accompanying it was very cool too. Great organisation behind this effort. Wish you all the very best. Great stuff :)
    Bob and Sasha like this.
  9. Purple

    Purple Bundle of purpliness

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    I do think language is important and 'chronic fatigue', even with 'syndrome' should be avoided as much as practically possible - and I think this should include asking the people interviewed to take this into account. There are people who respond to visuals better and people who respond to words better so this needs to be considered together. And if the visuals are of extreme suffering (tubefed people, young people in dark rooms, immobile people barely able to whisper, incontinent people, people losing pretty much everything in life - in effect personal tragedies hidden from society) and the language talks about 'chronic fatigue' (and most people/general public will not think as far as 'syndrome' or appreciate the importance of this word and how it changes the meaning when put together with the preceding two words... the word 'syndrome' is just meaningless and abstract to most people), the overall message would be confusing and possibly counterproductive. I am assuming this documentary will be in a sense public relations for our illness and given how much confusion, misunderstanding, stigma and outright contempt there already is, the language - as well as the visuals - need to be carefully considered so that they do not add to this. To put it simply, it would be inappropriate to give the images portraying extreme suffering a confusing and minimizing label that would hinder understanding while implying it is an acceptable label.

    Multiple Sclerosis is known as a crippling disease, Lupus is known as a crippling disease. These diseases are comparable to ME in terms of disability they cause, chronicity and other respects too. They have a range of severity too. Yet if you say 'Lupus' or 'Multiple Sclerosis' to most people (though of course not everyone), they will think "horrible crippling disease", "paralyzed people in wheelchairs", "more should be done to help the poor people who have it", "I hope I never get it" etc. This is because these diseases are generally known by how sick the sickest are - not how sick the least sick or the moderately sick are. And certainly not everyone with MS is wheelchair-bound during the whole of their illness - yet this is how MS seems to be generally perceived by the public. With ME - if the public knows anything at all - they won't have the same understanding and often will have an impression of ME far removed from reality: and if counteracting these erroneous views of ME is the goal of the film, there needs to be a clear plan how to achieve this and how to have a consistent message.

    In other words, I consider words and language just as important as visuals for a uniform and consistent message, especially given the situation around this disease being what it is. (Hope this doesn't sound harsh, it's meant to be constructive feedback.)

    'Voices from the Shadows' tackles the language (and imagery) issue appropriately IMO - ME is used throughout the film, CFS is used to show how inappropriate this name is for such a devastating disease and how much of a detrimental effect is has had and continues to have.

    With regards to the visuals of 'looking fine' and not looking fine the next day - the following video features a woman who is shown looking fine one day and then there is a photo of how she looked the next day, due to the after-effects of activity beyond her threshold. Also notice that she talks about muscle pain, muscle weakness, headaches, digestive problems etc.:
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  10. Nielk

    Nielk

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    Another idea for the visual of before and after would be if a patient had a video of themselves doing a vigorous activity before falling ill, that can be showed to highlight the difference of how the patient is now. For example I have a video happily dancing at my daughter's wedding a couple of years before I became ill. Now, I shuffle my feet just the few steps a day that I walk. It could show the stark contrast.
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  11. Sasha

    Sasha Fine, thank you

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    I agree - I think it could be a real consciousness-raiser for them.
  12. RyanPrior

    RyanPrior

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    I think my response to Koivy was a little too strong and have been thinking about this a lot. Getting the wording right on simply talking the name is going to be really tough. I'm thankful for all the interesting discussion. Avoiding "chronic fatigue" is going to extremely important and yes, we will do our best to avoid it through "fancy editing" if necessary, as Koivy notes. We wanted to do that with the trailer, but we were working with limited money and limited time and limited access to knowledgeable specialist. We do promise to do a better job eliminating the lapses toward "chronic fatigue" when they come up. And yes, "chronic fatigue syndrome" is such a hated name. I'm embarrassed every time I tell someone I have it and then have to explain that's actually a devastating illness. I'm still brainstorming that one, and so it's good to do the brainstorming in public.

    We do know, as Purple is saying, that there's a lot of power in talking about the 25% of the most severe cases. I've had very little interaction with people with MS, but one of my professors' wives had it, and she had to use a walker. Her speech wasn't always clear. It was really evident there was something going on. I also know, for instance, that Ann Romney has MS. However she appears very strong in public. When I think MS, I think of my professor's wife, not Mitt Romney's wife. So when people think ME, they need to think wheelchairs and speech problems. It can't be people making big public speeches.

    When we focus on the 25%, it'll be primarily ME. CFS won't really be a meaningful, or accurate, term for those most severe and we won't need to use it. We'll have to work to completely eliminate "chronic fatigue" and limit the use of "chronic fatigue syndrome," and when we do use CFS, we'll have to use caveats whenever possible to talk about how it's an inadequate name for severe suffering (basically as Purple is saying). We'll want this illness to be thought of in terms of how sick the sickest are.
    Svenja, Koivy, Purple and 3 others like this.
  13. Sasha

    Sasha Fine, thank you

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  14. RyanPrior

    RyanPrior

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    Also, I haven't seen Voices from the Shadows except for the trailer and the 4-minute introduction. I'm ordering a copy today. I'm surprised people haven't talked more about I Remember Me; that was a very meaningful movie for me when I first got sick. It was great for explaining this illness to people close to me and for making newly diagnosed people feel validated. It went to Sundance, and as far as I know, was very well-received. What really moved me the most was when Dr. Klimas (I think) made a statement in the film about how her days treating CFS were more difficult than her days treating AIDS. That was so important to hear. It validated everything I'd gone through.

    I've concentrated most of my attention on how to do better than I Remember Me, so I have a much better set of answers on how we'll be different than that one. What really stuck out to me was that the illness was presented as such a mystery in I Remember Me--it felt like a random occurrence that happened to sporadic people. Now, just one of the huge differences between 2013 and 2000 when that film came out is that we have Facebook now. Facebook/Twitter/Web 2.0 is such a game-changer for organizing a community of sporadic sufferers too ill to leave their homes.

    More than ever, I've felt that this is a tightly organized international community that simply just hasn't had a chance to break through yet. Of course the Holy Grail bio-marker isn't there for us, but it's not there for Parkinson's or others. What is highly noticeable, though, is that the illness is known with a very high degree of specificity within our sub-group. Patients all use remarkably similar patterns of language.

    I promise to watch Voices From the Shadows and get a better response regarding differences with that film. But the biggest thing I want to portray as different than I Remember Me is that this is a highly organized sub-group that needs recognition. This is not isolated sufferers of a mystery disease. We're dealing with a highly documented global illness.
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  15. RyanPrior

    RyanPrior

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    I'm trying to keep my comments short, but one other difference from Voices From the Shadows is that we have an opportunity to be more upbeat. We've got a lot to be proud of: everything Bob and Courtney Miller have done is brilliant cinema: talking to the president, slamming money on the table, skydiving, hunger-striking. It's amazing stuff.

    Judy Mikovits and the XMRV saga were really great, and we're trying to line up interviews with her. Her tale is inspiring and reads like a thriller.

    We've got a few other things in mind that I don't want to say yet. We're definitely going to dive down into the depths on severe ME, but we've got a lot of bright spots.
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  16. Nielk

    Nielk

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    Ryan said
    I think showing the issue with the name in the documentary; how demeaning and misunderstood it is, would hopefully make people understand what we have to deal with.
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  17. Sasha

    Sasha Fine, thank you

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    I'm delighted to hear you say that - I think it will be hugely important. Dr Nancy Klimas is highly respected by patients and yet frequently refers to 'chronic fatigue' even though I gather that people beg her to stop - I'm just listening to the pre-FDA workshop session with her and Dr Peterson and they both just did it, I think.

    I think they maybe use it as shorthand in the same way that doctors talk about Parkinson's, not Parkinson's Disease. It's a mouthful but I'd rather they said 'CFS' than 'chronic fatigue' if they won't use 'ME'.

    I'm glad you're on the case with this issue. If someone set out to design a name to make our illness sound trivial - and who knows, perhaps that was exactly their intention - they couldn't have done a better job. I really can't think of a worse name.
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  18. Sasha

    Sasha Fine, thank you

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    Although people speak highly of VftS, I don't think anyone should be afraid to do a new project or feel that the ground has been covered. Would you be more interested in seeing a brand-new film about some issue or one that's two years old? I'd want to see the new one!

    I think a US-focused film would be good from the point of view of us being closer to having a critical mass of clinicians, science and advocacy in the US - I think it can do most good there and reap the most benefits for all of us.
  19. Bob

    Bob

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    Yes, that's what I've been thinking. I haven't see Voices from the Shadows, but I think it's quite UK centric.

    "I Remember Me" doesn't seem familiar to me, but I wasn't ill in 2000, so maybe that's why. I've probably seen short snippets of it on the internet, but not the whole film.

    Yes, I think it's making such a massive difference, and an ever increasing difference. Our momentum, as an advocacy community, seems to be ever-increasing. I've seen enormous changes even since I became ill, 9 years ago. (e.g. I think this forum is only 8 years old.)
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  20. Nielk

    Nielk

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