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How to promote Jen Brea's TED talk when it goes up on YouTube?

Discussion in 'General ME/CFS News' started by Sasha, Jun 29, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Jen Brea's TED talk sounded amazing and should go up on YouTube at some (unknown) point. :woot:

    From another thread:

    Discuss! :)
     
    Last edited: Jun 29, 2016
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  2. Bob

    Bob

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    There will be the usual social media activity, of course. We could ask people with large followings on social media to share it.

    When promoting the video, it would be helpful if we can link to some context and background info, on a page on the ME Action website. i.e. some background about Jen and her film; about how she came about to be making the film; and some background about the illness and latest research insights; and some info about current research projects; and also some info about how people can help support the community including how to donate to various research projects; and info about where to find help and support. Perhaps we could work together to write such a webpage? It would take long if a number of us were to put the information together.

    We can get all of our patient organisations to share the video widely.

    Also, we could ask CFSAC how they could promote it. e.g. perhaps they could try to get a link to the video placed on the CDC website.

    We could ask that the video gets shown at the IACFS/ME and UKCMRC conferences.

    The only other thing that comes to mind is that we could have an organized effort to send the video to journalists and our political representatives. It would make it much easier for everyone if there was some pre-written text to use. i.e. that we could copy and paste to promote the video to journalists and our political representatives. This could be similar to the text that I suggested above for an info webpage.

    Just some thoughts.
     
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  3. sarah darwins

    sarah darwins I told you I was ill

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    Any idea how long the talk will be? Is there a standard TED-talk length?
     
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  4. Sasha

    Sasha Fine, thank you

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    I think Jen said 16 mins.
     
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  5. A.B.

    A.B. Senior Member

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    @Bob is making a lot of sense.

    In addition, also actively ask journalists and allied media to share the video, explaining that patients urgently need to raise awareness of this issue, which is the existence of the illness, but also the lack of appropriate response towards it from larger society and medicine. It really is a political problem and I trust that if we can present the issue well (as Jennifer has apparently done) then a lot of positive change is possible.

    And the message must leave no room for interpretation! The journalist who wrote the Ted article on the talk seemed to have misunderstood and interpreted it as call for more psychosocial solutions, but fortunately it was edited (I did not see the original, just going from what others have said). There is no doubt that psychiatrists will fear losing prestige, influence and income and they will try to remain relevant, distorting the message, or even attempting to use it to promote more psychosocial interventions.
     
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  6. sarah darwins

    sarah darwins I told you I was ill

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    OK. That's very manageable. Sometimes people send me links for videos that are 84 minutes long or whatever and I just can't be bothered.

    Probably worth working the length into any promo subject line. "16 minutes that will .... [whatever]"
     
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  7. A.B.

    A.B. Senior Member

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    The info page proposed by Bob should contain links to the IOM and P2P reports. We need to avoid looking like loonies that have made up a disease. These reports add the necessary weight. They also provide technical information to doctors and researchers that might want to learn more. In fact it might be good to write a paragraph specifically for researchers to let them know that NIH plans to increase funding and that ME/CFS is a challenge where new discoveries will undoubtedly made.
     
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  8. A.B.

    A.B. Senior Member

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    The info page proposed by Bob could have a paragraph that focuses on the most relevant information for each important target population: general public, doctors and nurses, politicians, researches.

    The general public would probably be more shocked to find out how little has been done and that it can affect everyone and that there's no cure.

    Doctors would probably find some more technical details interesting, along with mention that comborbidities can be treated. The message is: doctors are useful and necessary even if the illness is poorly understood.

    Politicians would probably most interested in the number of people affected, lack of political engagement, and economic damage done by lack of treatment. The message is: politicians could make a huge difference and we cannot afford to ignore the problem.

    Researchers would probably be interested in the NIH plan to increase funding, and a quote by Ron Davis on how this is the last major disease we understand almost nothing about, and which explanations are the most promising (meaning: it's a challenge, we really need you to help, and by doing research on the disease you could make a name for yourself as having discovered something important)
     
    Last edited: Jun 29, 2016
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  9. Keela Too

    Keela Too Sally Burch

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    People read short and snappy things best. So perhaps a fairly short initial piece that refers to the various issues but not in depth. The depth can then be explored further through links to longer explanations and existing articles.
     
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  10. Sasha

    Sasha Fine, thank you

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    I wrote this static page for Phoenix Rising last year, aimed at journalists:

    http://phoenixrising.me/for-journalists

    It could definitely be improved upon, and #MEAction themselves might want to host something.
     
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  11. BurnA

    BurnA Senior Member

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    I wonder is there any way to make a 1-3 minute 'bait' version ?
    In today's world of twitter and fast news most people just don't read or watch and anything more lengthy than that. Unless specifically interested of course.
    Anything viral is generally in that timeframe. I am not sure if this could go viral as such but for it to reach the widest possible audience perhaps a shortened version should be considered.
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    I don't think any of us in this thread have seen it yet? It might be possible, but you'd better ask @JenB first.
     
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  13. BurnA

    BurnA Senior Member

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    I was just throwing it out for discussion really !
     
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  14. Bob

    Bob

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    Acknowledging that it definitely needs to be very short and snappy. Suggestion for info sections...

    • About Jen.
    • How/why Jen embarked on making a film.
    • About Jen's film.
    • About ME/CFS.
    • Brief background of ME/CFS e.g. lack of treatments, lack of funding.
    • Latest research insights into ME/CFS.
    • Current ongoing research projects.
    • How to support ME/CFS patients and where to donate.
    • Where to find help and support.

    Helpful weblinks.
    - Include the IOM and P2P reports.

    Further info for...
     
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  15. A.B.

    A.B. Senior Member

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    I strongly feel that doctor/researcher/politician/etc targeted info should be only a paragraph each. All the information is relevant for everyone, and it should be short. Having separate pages for these is more work and will probably not catch reader attention or even be perceived as manipulative if pages are titled "for doctors" etc. The idea was more about having to strike different notes for different folks. So one paragraph that's a bit more about the science, another that's more about economic and public impact, etc.
     
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  16. Comet

    Comet I'm Not Imaginary

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    If there is a way to do it and is ok with @JenB, maybe a couple of short, attention grabbing clips could be aimed at the media.
     
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  17. eastcoast12

    eastcoast12 Senior Member

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    Agreed. This x100. Think about the way pace was released. A simple headline that said cbt and get helped people with cfs/me recover. Next Thursday g you know every god damned news paper had an article about its good for cfs/me. I'm guessing most people read the headline. If mildly interested they'll read a bit. Mayb 1st paragraph. If it still interesting they'll read on.
    A good title or headline. A1st paragraph giving a detailed jist. The following paragraphs go into more detail and links.

    Also I think it might be a good idea to play the bps game and throw in something about how because of a very few and well organized psychs (who happen to be extremely vexatious), have a fear behavior about being wrong. Because of their fear they subconsciously become less intelligent and more desperate in pushing the bps model. Seriously though I think it would be good to throw in something about the Wesley crew and their bullshit.
     
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  18. Tuha

    Tuha Senior Member

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    I think this is an unique opportunity to get attention from wider public. I think we could take this advantage and could try to ask them about the financial support of ME research. In the video, we could have some links where the people can donate if they would like to support ME research (OMF, Lipkin,...)
     
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  19. Silencio

    Silencio Senior Member

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    All, no need to build a page.. Millionsmissing dot org is being redesigned and rebuilt right now.. the TED video will be on the homepage when it launches. That way the video launch will help gain publicity for the ongoing effort for MM on Sept 27. So just to let you all know that there is something underway to drive to, before you guys get to building!
     
    Last edited: Jun 29, 2016
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  20. Sasha

    Sasha Fine, thank you

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    Sounds great - thanks for letting us know!

    Do you know when the video will be released?

    I'd assumed TED would just release all its summit videos when they were ready, but maybe not!
     

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