1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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The Lipkin Microbiome Crowdfunding Campaign Launches!
An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!
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Needed: existing YouTube excerpt of medical authority &/or patient on severity/nature of ME

Discussion in 'Fundraising' started by Sasha, Feb 27, 2014.

  1. Sasha

    Sasha Fine, thank you

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    Hi all - I'm putting together content for a website for the Lipkin microbiome project fundraising campaign and I'd like one or two video clips - maybe just two or three minutes - to show how severe ME can be, how it affects people's lives, what it's like to have it, what a serious problem it is in society, etc. - the sort of stuff we'd like people to know about our disease.

    I want YouTube clips only, because they're playable worldwide without copyright limitations and people are familiar with them.

    I want people talking, not screens of text.

    I can take clips from YouTube from a longer piece so it doesn't matter if the interesting bit is part of something longer.

    I'm looking first for a clip with some kind of medical authority figure - could be one of our big hitters like Peterson or Klimas - or someone that people outside our community would see as impressive, such as someone from the FDA, NIH or CDC.

    It could be from a conference, press conference, CFSAC meeting, TV interview, webinar, anything.

    Then I'd like a clip from a patient (possibly plus carer) talking about what it's like to have the disease, the important symptoms, and so on. If it's someone who might be well-known (like Laura Hillenbrand or someone), even better. I'd like someone who comes across as likeable, and who people can sympathise with.

    Thanks! I'd appreciate help with this.

    Edit: US clips would be preferable if we can find them because we'll especially targetting a US audience and don't want to give the impression that this is something only of interest overseas

    Edit: if you find some good bits in a long thing, it would be very helpful if you could tell me at what time on the video it crops up! I'm flat out on getting the web content together and it's a big job - anything that saves me time would be hugely appreciated. That said, if you know there's a good bit in there somewhere and haven't had time to view it, post it anyway!
    Last edited: Feb 27, 2014
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  2. Helen

    Helen Senior Member

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    Sweden
    Dr. Daniel Peterson giving a lecture for Swedish´parliament members on the importance of medical care and research for ME/CFS patients. I think there are some really good parts.



    edit: with Sasha´s more precise call for videos I realize this will not match, but maybe interesting to watch for someone in need for an experienced doctor´s support of ME/CFS.
    Last edited: Feb 28, 2014
  3. Sasha

    Sasha Fine, thank you

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    @Helen - thanks very much for that - I should have said in my first post (just edited it!) that if you post a long clip it would be good to let me at at what time the good excerpt(s) occur - otherwise I'll have hours of watching and I won't be able to manage it.

    There seem to be quite a few European clips, oddly - I think some US ones would be preferable if we can find them because we'll largely be addressing a US audience and don't want to give the impression that this is something only of interest overseas (I'll edit my first post to say that, too!).
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  4. Sasha

    Sasha Fine, thank you

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    Just thought... maybe a patient giving testimony to CFSAC or that FDA workshop...

    Ideally something that's all about what it's like to be ill but that doesn't get into specific treatments (at least, not in such a way that can't be cut).
  5. Kate_UK

    Kate_UK Senior Member

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  6. Sasha

    Sasha Fine, thank you

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    Thanks, @Kate_UK - very distressing footage - I think I'd rather go for a more representative case, though - poor Sophia, as it says, was (at the time, anyway), the world's only death attributed directly to ME.

    I think it would be good to have a US patient, if we can - again, we're going to be mostly pitching to a US audience and we don't want to give lay people the impression that this is just something that goes on in Europe.

    Thanks anyway - this is proving much more difficult than I had expected! o_O
  7. Purple

    Purple Bundle of purpliness

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    Laurel B's CFSAC testimony from 2009 (she is a US patient):


    A short video by a lady with severe ME (from the UK):


    A popular ME awareness video - though it starts with a reference to the UK:


    Jessica's (UK patient) 'The World of One Room' video:
  8. Sasha

    Sasha Fine, thank you

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    Thanks, @Purple - I think we've got to get away from UK ones because they're not going to play as well in the US (I edited my initial post to include that when it came up earlier -you might not have seen it). I'd seen the Laurel B one but I'd prefer to have something in a patient's own voice if we can get it. The scripted one doesn't appeal because it's scripted - for our purposes, I think we want something natural and straight from the heart.

    Some of the others are a bit slow to get going - I think we need something punchier.

    I'm sorry to sound like such a princess about this! I wondered if there might be someone who gave it to CFSAC or the FDA straight, at one of their testimony sessions.

    A good source would be a TV news feature - partly because they're well-edited and to the point, and partly because they've got good production values.

    Argh! o_O
  9. Sasha

    Sasha Fine, thank you

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    This, for example, is not bad (apart from the big 'chronic fatigue' thing behind the anchorwoman at the beginning:



    I'd like something with a bit more emotion in and maybe shorter - I've seen very short clips that have made me cry, sometimes, because the patient or their carer is breaking down. That could be very powerful.

    If I can find something from a more major TV channel, it might be more impressive.

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