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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Kickstarter project for excellent US ME/CFS documentary film

Discussion in 'Fundraising' started by Sasha, Jun 11, 2013.

  1. Sasha

    Sasha Fine, thank you

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    Excellent piece by an ME/CFS sufferer in USA Today College - his girlfriend has a degree in film and has made a superb trailer for a documentary film that she wants to make, to be used by campaigners to get screenings.

    Here's the trailer - watch it, it's amazing! Great clips of Bob Miller in action.



    Here's the USA Today College article - read it, it's great!

    http://www.usatodayeducate.com/stag...-the-hidden-story-of-chronic-fatigue-syndrome

    He's asking for donations on kickstarter to get it funded - total cost $12,000. They're already 10% there.

    http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine

    "We plan to travel through 10 cities across North America interviewing activists, patients, researchers, and doctors. We'll produce a feature-length film documentary for release on Netflix, Hulu, iTunes, and Amazon Video on Demand.

    Yet even more than that, we plan to equip people in towns and cities across the world to stage screenings of the film in movie theaters, schools, hospitals, churches, and community organizations. It's a tragic fact of this illness that most patients are far too ill to protest in the streets in order to get society to hear our voices. However, we can tell this story through a documentary film, widely distributed through grassroots organizing. We can tell the story, together, and help build bridges between communities of faith, politics, science, and the arts. True change will happen person by person, one community at a time.

    Nicole and I could never do this project on our own. This is a community project. It requires not only funding from individuals and organizations but also an army of people across the world who are on fire about this film and its message, who want to tell anyone and everyone about it. We'll make the documentary. We'll distribute it on Netflix, Hulu, and iTunes. But we'll need each and every one of you to help make its message stick.

    We've been reaching out to prominent researchers, activists, and scholars in the ME/CFS community and we've been excited about the response so far. But more importantly, we're delighted about the surprisingly strong response from all the "ME/CFS agnostics" with whom we've been talking. People with backgrounds in law, politics, science, faith, and the arts are moved by the struggle of people with ME/CFS and see this project just as we do.It is nothing less than a struggle for social justice. Come join us!"
  2. ukxmrv

    ukxmrv Senior Member

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    I'm not sure if this film is going to be hard enough to cover what needs to be said about CFS. I would need to see what they intend to cover and who they intend to interview and what they want to say first. I can't see what the message of the film will be. I'm already thrown by the claim that the Open Medical Institute will lead advances. I don't want to see interviews with "activists" who are not prepared to tell the real story.

    At the moment I am sitting on the fence but that may change once I know more.

    We need more films like "voices from the shadows" to be shown maybe?
    Sasha likes this.
  3. Sasha

    Sasha Fine, thank you

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    I expect they're open to a dialogue if you've got questions or concerns.

    I was swayed by the production and design quality of the sample clip and the strong content - Bob Miller slamming his $3.64 of NIH funding per head on the table at a public meeting, for example! Great stuff.

    I can understand people's reaction to any initiative in ME/CFS differing from person to person but I've seen a lot lately of people wanting an initiative to be 100% perfect in their eyes before they'll support it (I'm not directing this at you - you sound rather more equivocal than that and I don't think that's your position, but I'm making the point for later readers of the thread!).

    I think we've got to recognise that the baseline for supporting something isn't whether it's 100% perfect, but whether it would make things sufficiently better for us to be worth our support. I don't see another, similar initiative on the horizon and this one looks good to me.
    Dolphin and ukxmrv like this.
  4. Sasha

    Sasha Fine, thank you

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  5. ukxmrv

    ukxmrv Senior Member

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    I'll start to talk to them Sasha. My feeling is that any action doesn't need to be perfect but any chance we have to make a difference needs to send the right message or at least a nearly right message.

    After nearly 30 years of campaigning I have seen so many projects that never come to fruition that I have put a lot of energy into supporting (that includes films and documentaries). I've also seen so many opportunities for something good to happen been watered down and become ineffectual.

    "voice from the shadows" is so good and maybe the USA needs one of these made. It's up to USA people to say if that would be best for them of course.
    allyb and Sasha like this.
  6. Sasha

    Sasha Fine, thank you

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    They've posted this on FB today (they must have heard you, ukxmrv!):

    We're posting a FAQ page on our Kickstarter soon. I'll post brief answers here.

    1. We plan to interview severe patients when possible. We're interested in lifestyle adaptations such as canes, walkers, wheelchairs, and oxygen tanks, among many other possibilities. We also want to talk with severe children too. We can't allow these kids to grow up with an incurable illness in the 21st century.

    2. We have interviews lined up in San Francisco July 17th, when we're to speak with Dr. Andy Kogelnik at the Open Medicine Institute. From there, we'd like to talk with Montoya at Stanford, Dan Peterson/Simarron/Whittemore Peterson in Nevada, and Chia in Los Angeles. We haven't finalized those interviews yet because we'd like to be confident we'll be fully funded.


    They've got a button for asking questions at the bottom of their Kickstarter page.
    Nielk, Dolphin, allyb and 1 other person like this.
  7. ukxmrv

    ukxmrv Senior Member

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    Thanks Sasha, that's brilliant. I'll take a look shortly!
    Sasha likes this.
  8. Sasha

    Sasha Fine, thank you

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    Dolphin likes this.
  9. Sasha

    Sasha Fine, thank you

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    That's funny, there were some interesting comments on there a minute ago - good questions, good answers - and they've all disappeared. Maybe they'll come back! :thumbdown:
  10. Sasha

    Sasha Fine, thank you

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    Oh - meant to mention, they've got $4,545 so far and they need $12,000 - it's rolling in!
    Dolphin likes this.
  11. Nielk

    Nielk

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    Thanks Sasha.

    To me this is one of the most positive initiatives that I have heard about since I am became ill. I am impressed with the quality of the video and the enthusiasm surrounding it. This is an amazing opportunity in my opinion. I really hope that this will not get muddies with political debate. This documentary does not have to come up with any answers or solutions. all it needs to do to be effective is to show the very sad state of affairs. We need to be heard. (and shown)
    Dolphin likes this.
  12. lnester7

    lnester7 Seven

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    I wish they do not use the term chronic fatigue (Alone without the syndrome) NOT THE SAME.
  13. Sasha

    Sasha Fine, thank you

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    On Kickstarter, by the way, you get your money back if the project doesn't make its funding goal by the deadline. Or maybe it's that it never leaves your account until the deadline and then only if the money is raised. I forget which, but it amounts to the same thing...
    Dolphin likes this.
  14. Sasha

    Sasha Fine, thank you

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    Have they? Tell them! Do you mean the documentary authors or one of the people they interviewed in the film clip? But it's clear that the documentary makers are talking about proper ICC/CCC ME and know the difference - see the discussion on Reddit. I'm impressed that they're open to discussion, knowledgeable, and giving good answers. They look keen to engage.
    Koivy and Dolphin like this.
  15. lnester7

    lnester7 Seven

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    Whoever speaks in the film has to move the cause forward so ME would be preferable. But Just don't use chronic fatigue.
    Koivy likes this.
  16. Koivy

    Koivy

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    I am very glad they have a Reddit page and are open to questions and discussion. I have to admit that in the beginning (several days ago) when I first came across the idea, I was very skeptical and afraid that they did not have a good enough understanding of the illness to portray and to send the right message. I was also put off by their trailer, using someone from Holtof's group as a doctor to interview - to me, this seems more like they were treating a people with multiple deficiencies and imbalances and thyroid and adrenal issues (basically functional medicine)...than someone with ME. But I am now starting to become more open to the idea as they seem more willing to learn - though to me, their knowledge still seems to be quite lacking...but the effort they are putting in is to be applauded. Esp since it seems that Ryan had not engaged much in the community while he was sick and is now just starting to learn.
    Nielk and Sasha like this.
  17. Sasha

    Sasha Fine, thank you

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    Why not post on Reddit and say so, lnester7? It's a good point you're making. Even Nancy Klimas is careless in her use of 'chronic fatigue' without the 'syndrome' and that kind of thing can be edited out.

    Ryan (?) seems very open to learning and responding - let's not be shy about asking constructive questions and helping him make a good film for us.
  18. Sasha

    Sasha Fine, thank you

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    Here's a good Q&A from Reddit, I thought:

    Question
    I am concerned that your documentary will actually exacerbate confusion about the nature of ME, given what I have read of your kickstarter proposal and articles. I don't mean to seem so negative, but the lack of acceptance of this disease is in large part due to popular misunderstanding of key aspects of the social, political, and scientific context of the disease.


    With that concern in mind, I have a fairly simple question:

    What do you understand about the definition and diagnosis of CFS?

    Answer
    This is an important question and I'm surprised I haven't been asked this more often. I cringe when I read that first article now, particularly the sentences criticizing the XMRV research. I will say, unequivocally, that I was wrong. I link to that particular piece now, not as a statement of current beliefs, but more as the start of my journey toward becoming educated.

    Specifically, to your point, when I wrote the article(s) in question, I had very little knowledge or interest in the Fukuda, Oxford, Canadian, or International Consensus definitions of ME/CFS. I didn't understand why Post-Exertional Malaise is one of the most important components one of the definitions should have. I had no knowledge of how to formulate research subsets based on presence or lack of these criteria, and I didn't understand that the hallmark of ME is acute brain injury and inflammation of the brain and spinal cord. I was ignorant and I wish more people would call me out on that.

    To your point about science and politics. It is difficult to get a FDA-approved drug for ME/CFS because it is difficult to get the NIH to fund research. The NIH has a bad track record at funding research in part because defining subsets of ME/CFS is so tricky, and it's hard to get all researchers to study the same type of patients in a sample. It's hard to get researchers to see that they can get a positive return on doing this research when the definition of the illness is variable. Getting an agreed upon international definition is crucial and that's why the current petition that we'd all like to be brought to the White House will require the use of the Canadian Consensus Criteria, post-exertional malaise, and will get US to use the term Myalgic Encephalomyelitis, as it should have done for the past few decades.

    XMRV, had the linkage proved correct, would have been an absolute sea change in cultural, political, and scientific acceptance. I wish I could have seen that.
  19. Sasha

    Sasha Fine, thank you

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    100 backers and 42% funded. It's going well!

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