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Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
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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. Koivy

    Koivy

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    To Ryan who said "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"

    I absolutely agree that together we are stronger together and believe me, as a person of color, the civil rights movement is close to my heart. I didn't mean to intend that you should dryly spell out definitions in your documentary. What I meant is that since you plan on going into the history of the disease, I thought it would be a good idea to point out that the definition of CFS that was was coined during the outbreaks in Incline Village eventually became very diluted with multiple definitions and then became conflated with ME. Not that your documentary is going to be another Osler's Web, but I just thought that a small part of the documentary should be directed to that small piece of history and maybe even point out why and to who's advantage this may be....and then to how much suffering and social injustice that has caused patients, all the way from confusing physicians to making research very messy. So yea, in this sense, semantics is kinda important. And words do matter. Thoughts about this piece of history?

    In no way do I think that the film should focus on the differences and divide the commmunity, but like Purple and you said, there is a lot of power in words and using the right words. We don't want the film to cause more confusion. Have you seen "Under Our Skin," a documentary about chronic Lyme disease? They had to spell out the difference between acute lyme and chronic lyme and a whole bunch of stuff to get their point across and to avoid confusion for the lay audience since many people do get lyme and get well very quickly with just a short course of antibiotics. Even with all the semantics, mnemonics, and details, the documentary and the stories it told was still very moving, heartfelt and eye-opening.

    When Ryan first announced the project, I remember asking him several times (haha sorry for the bother!) about making sure he focuses on the 25% worst ME cases because just like Purple said, when we think of the disease, we often think of the WORST cases. When people think of AIDS and cancer, they think of the absolute worse, but plenty of people look fine and live functional lives with those illnesses. When we encounter those people who are highly functional, we don't question whether or not they have AIDS or cancer. We just accept it. But I'm not so sure that will happen right away with ME - people may end up questioning the diagnosis if you aren't in the worst 25%. With such an invisible illness, you don't even have to be moderately functional to be questioned. I don't want that to happen.

    So the more that I think more about it, I do that it is important to also show patients who look fine too, just like what Sasha said too: "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." Sometimes (maybe once a year), those on the severe end of the ME spectrum still have to leave their house or push themselves to leave their house and then be told by well-meaning people that they "don't look sick" and so must not be sick since they are out of the house that one day. Showing crashes from simple activity would be very powerful.

    I babble on - cognitive dysfunction. I hope I made sense!
    Sasha, Jarod and Johannes Starke like this.
  2. Johannes Starke

    Johannes Starke

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    Congrats on reaching out to the community through this forum. I'm very impressed with everything I've seen you do with regards to this movie, Ryan.

    With Gratitude,
    Johannes
    RyanPrior and ukxmrv like this.
  3. ukxmrv

    ukxmrv Senior Member

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    I've seen both "I remember ME" and "VFTS". There was a screening of the latter in London and other centres in the UK. I've still got "I remember ME" on an old video tape somewhere. It was also shown on a TV station somewhere in Australia but that was a small station and overnight. There was a push to get "VFTS" shown on UK TV but they weren't interested.

    Both great but different. Yes, "VFTS" is a hard movie but it is an honest testimony to the lives patients can lead. It doesn't pull any punches or feel the need to include something upbeat. My life doesn't have many upbeat moments around this disease.

    I'm wondering about the "upbeat" Ryan. There is a stereotype of the disabled as being "plucky survivors" and I'm not sure where I am going with this.

    Personally, I am very proud of all the people who protested and did public events. Remember Rivka and her protests and videos. If we do show the protests it would have to be said that no one pays any attention to us when we do this. I'm not sure how upbeat that will be.

    Just rambling here. I don't want the suffering I see in PWME and CFS to be discounted somehow as needing an upbeat part to somehow make it OK for the rest of the population to stomach.

    Thanks Ryan for listening and responding.
    Koivy and Bob like this.
  4. Nielk

    Nielk

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    I think the answer here is probably in the balance. which is pretty tricky. Ryan already expressed his desire to show the severe sufferers but, I agree with him that it should not be too morose. I watched the film a Shadow in the Darkness. I was impressed by it but, did not want my family to watch it because I was afraid to scare them.
  5. caledonia

    caledonia

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    This is exactly what happened - it's documented in the book Osler's Web by Hillary Johnson. The doctors on the govt. committee to pick the name deliberately avoided using ME (they were well aware of it). ME cases were fast rising in the 80's and patients got sick relatively young and never got better. This was resulting in a huge new cost for disability insurers. So you trivialize the disease and make it sound like a mental illness. Then you can deny people outright, or if they do happen to get accepted, cut them off after two years. Hillary has an internal letter from one of the doctors reproduced in the book. This guy obviously had some kind of relationship with disability insurance companies.
  6. caledonia

    caledonia

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    You should follow this story - http://forums.phoenixrising.me/index.php?threads/very-sad-news-from-denmark.15983/
    Being "sectioned" is more common in the UK, but there was also an example in the US a few years ago of a child being taken by Children's Protective Services. I think the boy's name was also Ryan.

    There are people with really bad MCS along with their ME/CFS who live in tents or sheds. That's another good one to show. http://forums.phoenixrising.me/index.php?threads/gillian-mccarthy-winter-den-appeal.20849/

    There was a couple who used to post on here who lived in a tent in their dad's backyard. I haven't seen them post in quite awhile though.
  7. caledonia

    caledonia

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    If you want something upbeat, there are people who are recovering using methylation treatment. Some a little, some a lot.
  8. Sasha

    Sasha Fine, thank you

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    I think there are huge advantages to having an upbeat movie, in the sense of one showing hope. People want to see upbeat movies, not depressing ones - we can get a much wider audience with an upbeat movie and they'll be seeing plenty of distressing stuff during the course of it even though there'd also be an upbeat aspect, because that's inevitable. I don't think that 'upbeat' need downplay the seriousness of the disease or the difficulty of the struggle.

    But people will join in with a successful, positive campaign and avoid joining things that appear to be failing. Think of MEandYou! A very positive campaign, and very successful. I think it's important that it's upbeat. I want a movie that gets across our struggle but that won't be too distressing for me to want to watch (like VftS) or that I wouldn't want to show my family because it would upset them. We need approach, not avoidance.

    I want people to come away from it fired up and wanting to join in the struggle, not depressed and walking away feeling hopeless.
    Svenja, Bob, Valentijn and 1 other person like this.
  9. Firestormm

    Firestormm Content Team Lead

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    Or left feeling 'why should I bother supporting them - they aren't going to get better; they're saying they've tried everything, etc. etc. etc.'

    I sometimes worry that I don't look at ill as someone with tubes up their nose but then people with MS aren't all unable to support their own weight, or unable to speak, and neither do they all dribble all the time or are unable to swallow solid food....

    You don't get MS promotional videos that focus exclusively on the most severe. If this is all about - eventually - getting people to fund medical training - then doesn't it have to show how trained medical experts can help and assist pwme in their daily lives even if there is no 'cure'?

    Just floating some thoughts that are buzzing round my brain cell this morning :)
    Sasha likes this.
  10. ukxmrv

    ukxmrv Senior Member

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    It would be nice to point them in a "direction" but does one exist to point them in?

    USA people will have a better idea what message needs to go out than I will have

    Maybe Ryan has some thoughts already
    Purple likes this.
  11. Sasha

    Sasha Fine, thank you

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    I don't think that will be the message - Ryan will be interviewing our leading scientists and clinicians so I think there's going to be a lot of, 'with proper treatment, which most people don't have access to, there can be improvement,' and 'there are promising drugs like Rituximab and Ampligen, we need help to get trials'.
    Firestormm likes this.
  12. lnester7

    lnester7 Seven

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    You know I would like to see very young children, I have not seen those but I know they exist.

    You can do upbeat and still get the point across, I remember the video from Jessica and her birthday, it was sad as hell but she was showing positive objective (sit for her birthday) while communicating the battle and the work and the sadness of it all. That is how I imagine a documentary for ME. There has been to much only show positive so we don't show the ugly as much. I think is time!!!! Let people know this is not a pretty decease and the crap we have to deal with.

    I am hilarious sitting in the supermarket's floor while every person that passes by ask me if I am ok. When I am trying to take a shower and try to bend over to shave without passing out!! Or when I need to dry my hair and my arms get tire, When I have to be in a meeting making a presentation while the worse brain fog downs. When I have to go to my car for lunch break to take naps so I can make it throughout the day. When I travel and have to lay down on the airport floor so I can sit for the flight duration. Or plain need to pee and I cannot move or even talk to ask for help!!!

    It is time to get all this crap across. The painful day to day adjustments so we can even look normal.
    Valentijn, ukxmrv and RyanPrior like this.
  13. RyanPrior

    RyanPrior

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    I did talk with Rivka about possibly staging a protest for the film, but yes, it's hard to see what we could get out of it.

    Michael Moore does use that kind of small protest on the street approach in his films with the express purpose being to make people in power look foolish. But I'm not really out to use Michael Moore's confrontational style.

    I've been thinking about 50% positive/hopeful and 50% negative/despair.

    I loved I Remember Me. It packed a big punch but was about 90% depressing. It also didn't really offer a way out or a call to action.

    Nicole and I have talked about two recent documentary films that have had great "calls to action." The first was Invisible Children, about Joseph Kony and child soldiers in Uganda. The filmmakers established a non-profit and seeded small clubs in schools across the world. I saw the documentary and became aware of the social issue because of a club at my high school. Students could raise money for the international Invisible Children non-profit. The school that raised the most money would get a trip to Uganda. My friends in the club wanted to raise money so they could win the trip. The other documentary is the more recent film Bully. The director set the goal of showing it to 1 million children. Schools across the country have used the film to discuss bullying on their campuses. It's really benefited from an overall wave of cultural attention to bullying.

    We've been very interested in using some of those techniques in our film. That's why we've put out the idea of the medical student fellowship, which Llewellyn King has been so instrumental in promoting. We're hoping to connect it to other "calls to action," for instance the Community Rising proposal that someone mentioned a lot earlier in this thread.

    In general, I hope we can frame the argument that people who get involved with this cause will be on the right side of history. We need to show the momentum the ME/CFS community is creating on its own, from patients' bedrooms, (crowd-funding its own research studies!). The public needs to see that they have a chance to join a movement that is truly going somewhere.
    Blue, caledonia, Nielk and 7 others like this.
  14. ukxmrv

    ukxmrv Senior Member

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    With the HIV/AIDS movement there were ACTUP and protests that well gay people and straight people could join.

    I can't see where the 50% positive will come from? But I am not in the USA.

    It might be a good idea for the USA people here to say what it is they want the film to address and what people would like to happen when people have seen it. If people want to get involved with this cause where will they go and what will they do.

    (and thanks Ryan for giving more info and listening)
  15. Mark

    Mark Acting CEO

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    I really like the approach you're taking Ryan, and I think the mixture of positive and negative is important. For me, the positive/negative issue is a 'spin' issue, in the sense that you can take a negative point and ask how can I frame that in a positive way? Often that means emphasising a positive step that people can take, the thing that you want people to do, rather than focusing on the negative that you don't like and complaining about it. I would argue that pretty much any negative can be framed in a positive way that doesn't in any way compromise the point you want to make. Lighting a candle rather than cursing the darkness. Framing things as solutions rather than problems.

    I think ukxmrv's point is an important one too: it's really important to think about what outcomes, what actions you want to promote. It's often all too easy to focus on awareness-raising and forget to then tell people what they can actually do - always suggesting to people who they can donate to in order to support research is a crucial one, and there may be other actions to recommend as well. Having done all that work to get people's attention and sympathy and understanding, it would be a great shame not to then go on to recommend practical ideas as to what they can then do about it.
    RyanPrior, Sasha and WillowJ like this.
  16. Bob

    Bob

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    That's an interesting idea. Perhaps it would be possible at the end of the film to ask people to help us find a treatment or cure, and provide details of how they can donate to a biomedical research charity, or a dedicated biomedical research fund.

    And perhaps provide a link to a website that informs people how they can get involved in various ways, perhaps including a letter template that they can send to their political representative to raise awareness.
    Koivy, Valentijn, Sasha and 1 other person like this.
  17. Sasha

    Sasha Fine, thank you

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    This is a really important point - I think there needs to be some thought and planning about what we want people to do once they've seen the film and it needs to be quick and easy. They say that if you have a website selling something, with every extra click you force people to make on their way to a purchase, you lose people. That's why Amazon's purchase process is so streamlined.

    So, someone has just watched the movie at a community screening. Should there be a leaflet on every seat that they can take away with weblinks for where they can donate, what they can donate to, where they can sign a petition, a template letter for them to send to their senator? Is this where we can push for appropriate NIH funding? And for those people watching the movie at home, is there a screen with all this stuff on?

    We need, I think, not to be presenting people with choices because if they have to make a choice they'll have to think hard and they'll walk away. Ideally, give them one thing to donate to, give them one petition to sign, one letter already set up on a website where they just click on their senator's name and it's auto-created and auto-mailed. And a website where they can find out more, like Bob says.

    That's a lot of work in planning and decision-making and that's an ideal world - but we don't want to waste this opportunity.
    Koivy, Valentijn, Bob and 1 other person like this.
  18. RyanPrior

    RyanPrior

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    Mark, love the thought on lighting a candle rather than cursing the darkness. When working on this project, I keep thinking back to one of my favorite poems by Charles Bukowski, "The Laughing Heart."

    your life is your life
    don’t let it be clubbed into dank submission.
    be on the watch.
    there are ways out.
    there is a light somewhere.
    it may not be much light but
    it beats the darkness.
    be on the watch.
    the gods will offer you chances.
    know them.
    take them.
    you can’t beat death but
    you can beat death in life, sometimes.
    and the more often you learn to do it,
    the more light there will be.
    your life is your life.
    know it while you have it.
    you are marvelous
    the gods wait to delight

    in you.
    Simon and Sasha like this.
  19. Firestormm

    Firestormm Content Team Lead

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    Sasha and Bob like this.
  20. PaulDB

    PaulDB

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    Ryan, a simple "thanks" seems pretty lame in light of all the work you're doing for all of us. You're a terrifically insightful young man with a lot of promise for your future. With as much compassion as you have in your heart, you'll go far. Thanks again!!!!!

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