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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
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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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    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.
    Simon, PaulDB, SpecialK82 and 13 others like this.
  2. caledonia

    caledonia

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    Regarding community help for those with ME/CFS - the Phoenix Rising Forum won $10,000 from a corporate charity contest last year to implement a community help program called Community Rising. It's hard to tell from the description, but I think it's supposed to be a website or maybe an app that would link patients with existing community social programs.

    It sounds like something that would work, so why reinvent the wheel.

    They haven't implemented it yet because they need help with editing articles on here, to free up time for the program, or so the moderators tell me.

    Here is a link to check it out: http://phoenixrising.me/about/projects/community-rising-mashup-site
    RyanPrior and COACH like this.
  3. dmbaken

    dmbaken

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    Hi Ryan,

    Thanks for your thoughts. Can you please give some information on how the film will be distributed?

    Don
    COACH likes this.
  4. Sasha

    Sasha Fine, thank you

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    Great plans, Ryan! I like how you've thought about all the different ways you can use the film for leverage. It would be good to ask the specialists as you do your tour whether they've got any ideas as to how to get your movie in front of medics at all stages of their career. Harvard and Duke, great - but there are medical schools not only all over the US but all over the world and it would be good to know how to reach all of them.

    There are also medical conferences, of course - it would be great to get a screening at a conference of 500 immunologists or infectious disease specialists and the other relevant specialities - the ones who ought to be treating us! The big ones often run parallel sessions and this could be one such session, co-sponsored with one of our own specialists, perhaps.

    We need a big brainstorm on distribution ideas!

    I've sent you a message - you'll see a little red flag on your inbox at the top right of the screen.
    warriorseekspeace likes this.
  5. Nielk

    Nielk

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    Hi Ryan,

    Welcome to the forum.

    I am very excited about your project. I have contributed to it and am following it's progress. I really appreciate the fact that you posted here and are looking for feedback from us.
    Firestormm, Tom Kindlon and Bob like this.
  6. COACH

    COACH

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    I am really interested in this project and I am supporting it through kickstarter. I am interested to know how you will cover treatment options. Will you be discussing your treatment as you did in one of your articles?
  7. Tom Kindlon

    Tom Kindlon Senior Member

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    I'm supporting it also.

    However, I could see that discussing treatment options could potentially cause problems e.g. if want to use it for a medical audience, they might only want so-called evidence based statements. Also, perhaps could date the documentary.

    But I'm just throwing out thoughts rather than wishing to dictate.
    Svenja likes this.
  8. Sasha

    Sasha Fine, thank you

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    I don't think it's aimed at patients, in terms of being designed to inform them about treatments - I think it's directed at the social injustice being perpetrated, which is exactly what's been missing all these years. We need other people as well as us getting angry about this and wanting to help us get research and humane treatment.

    Where all the investigative journalists have been all these years, I really don't know. They've missed a huge story. It's not like we haven't been telling them, either.
    RyanPrior, SOC, Svenja and 1 other person like this.
  9. Koivy

    Koivy

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    Thank you Ryan for answering these questions on Reddit and I am so glad you brought the discussion over to the community at PR. I really do appreciate your open-mindedness and willingness to learn. I think it's difficult for the ME and CFS community to vet your harder, mainly because most of us are too sick to do so, or even too sick to know that this documentary is happening, since there are other fundraising efforts happening right now too. For instance, after asking my question, I was so worn out that I couldn't come back here for days, and I don't do anything (other than eat and talk a bit - not much self-care and zero chores or anything as I am on the severe end of ME, though thankfully not the severest!). I do have a few more questions.

    1. It seems like you are admitting a difference between CFS and ME (which there definitely is). Will you be discussing that in the documentary and how and why the definition of CFS became super vague and then conflated with ME? Also, if you admit that you have CFS and not ME, then what does the term "ME/CFS" mean to you? I noticed that on FB, your documentary is called the "ME and CFS", but on Kickstarter, you called it ME/CFS. To me and many patients, there is a difference. Is there one to you? (In no way am I trying to minimize the suffering of those who do not meet the criteria for ME, because it can still be a life-snatching horrifying illness and the term CFS is really trivializing and even harmful. Wish there were another term for CFS).

    2. These names are so purposely confusing, that even the big-name researchers and physicians will have different meanings for the same words. For instance, Peterson, who was at Incline Village will use CFS to mean a disease much closer to ME since CFS was the term coined during the outbreaks....but what Peterson's idea of CFS is totally different from say, Teitelbaum's much looser and vague definition of CFS which relies heavily on fatigue. Another example, would be that Dr. Klimas, one of the authors of the ICC which calls for the separation of ME from CFS, continues to refer to the illnesses as "chronic fatigue". The community knows what these doctors mean when they choose the words that they choose....but how will you convey this to the layman watching the documentary, so that they will not get confused? I hope you will be able to bring this point up to all the doctors you interview, so that they are careful about their language (or maybe you just have fancy editing, :) ). 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.

    3. Aside from financial means, how else can we help? Some of us are very cash strapped (can't afford medications, housing, etc) but would like to help you with some of those ideas. I esp love all the different groups of people you want to affect, particularly starting a summer internship for medical students. I feel more confident about your project and will try to spread the word a bit more.

    4. How transparent do you intend on being when it comes to your interview questions?

    Thanks!
    warriorseekspeace likes this.
  10. rebecca1995

    rebecca1995 Apple, anyone?

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    Thanks for the info, Ryan! This sounds like a great project. I'm glad that you'd like to include the severely ill; here are some links that might give you ideas.

    • Jessica can't feed herself or sit in a chair: http://www.youtube.com/watch?v=VH-puNCQxh4

    • Ben relies on caregivers to wash his hair and cut his food:

    • Laurel is bedbound and unable to speak above a whisper: http://www.youtube.com/watch?v=LvweCk44WHs

    • Dr. Bell describes ME; a severely ill young man speaks: http://vimeo.com/34099309

    • Voices from the Shadows trailer: http://www.youtube.com/watch?feature=player_embedded&v=fxZG4QVkO2k

    • Scott Harris's review of Voices from the Shadows: http://www.rogerebert.com/far-flung-correspondents/a-howl-of-desperation-for-those-who-cannot-howl

    • Guardian article about Emily Collingridge's death: http://www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome

    • Laurel's testimony about severely ill patients: http://www.dreamsatstake.com/2011/09/testimony-glimpse-into-severe-mecfs.html

    • Article by David Tuller about the CDC and "CFS": http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

    • Lorna struggles to get downstairs: http://www.youtube.com/watch?feature=player_embedded&v=9aOpPG8KKIQ

    • Mindy Kitei's blog about Ean Proctor, the young boy whom Simon Wessely forced into a mental ward: http://www.cfscentral.com/2010/06/hard-cell.html

    • Alexis describes her life in silence and darkness: http://thecornerroom.tumblr.com/post/5818683466/a-new-language

    • Lili is completely bedbound: http://www.carersfight.blogspot.co.uk/2013/02/do-no-harm-do-no-betrayal.html

    • Peggy couldn't crawl across the room: http://www.hercircleezine.com/2011/08/10/when-words-fail/

    • No Poster Girl's blog about the symptoms that restrict her activity: http://nopostergirl.com/2012/11/27/a-thousand-things/
    Koivy, Johannes Starke, Nielk and 4 others like this.
  11. Matina

    Matina Guest

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    Hi Ryan:

    I am routing for this documentary!!! Patients....does anyone have any corporate connections to get corporate sponsorships. If a corporation needs a 501C status - they can always donate to a patient advocacy group that is a 501C and state it is for the film!

    Here are my thoughts for the film which I saw the same comments:
    - ME and CFS are not the same disease
    - CASE Definition - CDC Fukuda - NO! That is why we are not having successful clinical trials
    - The harm of CBT and GET for many ME patients
    - Watch the 2013 Spring CFSAC Mtg - especially the last day..last 20 minutes
    - Good Blog to keep you up to date on NIH, USHH, CDC federal policy issues: occupycfs.com
    - Definitely keep in touch with your contact at National Advocacy Alliance for ME/CFS (naame.org) to see all of our US federal policy initiatives
    - Definitely try to reach as many of the top #ME/CFS researchers and physicians that treat MANY patients of many subtypes
    - ME/CFS is a heterogeneous disease!
    - It would be great if you could also focus on how patients are treated while trying to get diagnosed - it took me 2 years to get diagnosed with many doctors sending me to see a Psychologist or learn how to mediate. I can not get a Primary Care doctor to treat me!
    - POOR CARE, SUBPAR Treatment
    - You look good! everyone will know what that means....LOL
    - Medical Disability hard to get and disability support is nonexistent for our community - nursing aids, help with neuro/cognitive impairment , hard to travel bc we need more than just a wheel chair - board early - doesn't work many time on planes...but I stand my ground expect one time Southwest Airlines would not let me and I started to faint and a passenger grabbed me and told them I am coming on with him to the Airline Agents! Another patient had difficulty on Alaska Airlines and was treated very poorly!
    - the lack of public and doctors' acknowledgement of the disease - think CFS is not a DISEASE. ME...what is ME?

    I think that is enough for now! Thanks for the chance for discussion!!!!! : ) Matina
    Sasha and RyanPrior like this.
  12. ukxmrv

    ukxmrv Senior Member

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    I wonder what people think is the best way to tell this story and what messages they want to tell?

    I imagine that Hillary Johnson would want to make her own version of Osler's Webb. If one wants to tell a story of social injustice then are the doctors and patients planned to be interviewed going to do this?

    Are there any doctors or patients left alive from the early epidemics who would say how they were blocked, ridiculed on camera and how the CDC bungled the 80's epidemic. Interviewing current doctors who have funding may be a mistake. It gives the impression that everything is OK and that science will eventually get the answer. We don't know if that will happen in our life times but we do know that decades have been squandered. Which doctor will tell that story?

    We need to show patients for whom the system doesn't work like those long termers living in poverty who cannot get medical care. If we show well dressed, articulate people who look "fine" then my feeling is that the general population won't get the message. If someone watching it could never afford to go to uni (as an example) and then hears that the rich person had to spend a few years in bed before their studies commenced then I don't think they will sympathise.

    Just a few random ideas that come to mind when I think about this project.
    Nielk, Sasha and Koivy like this.
  13. Kina

    Kina Moderation Team Lead

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    Hi Ryan. Welcome to Phoenix Rising. Your project looks absolutely fantastic. Mere words can't convey what ME is and how it affects us -- a documentary can.

    Thank you.

    Kina :)
    Nielk, Sasha, RyanPrior and 1 other person like this.
  14. diving_belle

    diving_belle

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    Hi again Ryan, totally support what you are doing and look forward to seeing the final product! Keep moving forward.

    My mom's epitaph reads: Believe in those who seek the truth; doubt those who have found it.
    Mine will read: The greatest beauty often lies of the far side of fear.
    ME is terrifying, but I am NOT crazy and I will NOT give into that fear.
    RyanPrior likes this.
  15. Koivy

    Koivy

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    I agree that well-dressed, fully made up people with wonderful clean hair who speak very articulately should be avoided. But the thing is, many of us do look "fine" even when we feel so far from it, and even when we aren't well-dressed and made up. We look "fine" whenever other people see us, when we are capable of making it to the doctor's office, or that once a year dinner we struggle to drop by on (but have to leave early) during the holidays. But if/when I do again, such as go wish my grandmother a "happy birthday", I will look "fine" despite looking extremely sloppy. What people don't see is when I don't look fine, which is 99% of my time. I think it's important to show that there are many people who look "fine" but are so faaaaaaaaaar from fine. They don't see the other 99% of time, where we may become completely bedbound and feverish and throwing up and all the horrible things that can last for weeks and months after we leave the house for 1 hr. Or how someone else had to dress me to make me look "fine". I think it's a good idea to show what life is really like behind the doors for many of those who look "fine" for that 1 day of the year when they actually leave the house. The whole "but you don't look sick" thing needs to be addressed. Even Jessica, the girl from one room, who has to be hoisted to sit in a chair for a short period of time, looks "fine" in most of her pictures.
    Svenja and Sasha like this.
  16. Koivy

    Koivy

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    I am also interested on how different and similar this project will be to Voices from the Shadows.
    ukxmrv likes this.
  17. ukxmrv

    ukxmrv Senior Member

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    Koivy, people who look "fine" can also be shown when they are crashed in bed. There are ways to get around having an "invisible illness" and the story not coming across correctly. One of the ways is to show them when they are invisible. Let the pictures tell the story. I'm not against family members saying what it is like caring for a sick person.

    The film makers need to be aware of the subplot or the impressions "well people" will get when they watch it.

    If we want to get the message out that the illness destroys lives then we must show them these lives.

    If we want to get the message out that research has been blocked someone needs to say this on screen and name names. If we want to say that there is no cure for the majority of patients AND that there is nothing on the horizon then someone needs to say this. If we want to say that we still don't know enough about the causes then someone needs to say it. If we want to say that the CDC has worked against us.....

    It's all to do with the message the film wants to make. It must be strong and not pull any punches for it to be effective. Then again a different message may be planned.
    Sasha and Koivy like this.
  18. Firestormm

    Firestormm Senior Member

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    Hi Ryan and welcome to the forum :)

    Have you seen the film 'Voices from the Shadows' made in the UK? Might be another source of inspiration for you. Tells the story from the patients' point of view and it has certainly made an impact with the medical and political audience over here.

    I realise you are looking at training needs and implementation of a specific programme - and I would imagine you'd need to liaise with the medical educators about this as well as ME experts - but for your film I think Voices is worth watching.

    Also noticed that Llewellyn has given you a feature on his blog:

    A Young Man, a Big Disease and a Big Idea

    June 17 2013
    ukxmrv likes this.
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I live in the 1st Primary state, so should get some good access for the 2016 Presidential election. When I have the energy and time.

    GG
  20. RyanPrior

    RyanPrior

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    This looks excellent. Very exciting.
    ukxmrv likes this.

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