The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Solve ME/CFS Initiative Times Square public awareness video

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Sep 2, 2016.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    ** Warning, potentially distressing images **

    From the Solve ME/CFS Initiative Facebook page

    Can be watched at https://nyc.solvecfs.org/ (the same link as in the quote) or on Youtube

    Not sure when this goes live, if it isn't already.
     
    Jan, leela, adreno and 13 others like this.
  2. JaimeS

    JaimeS Senior Member

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    Great work guys!
     
    Never Give Up likes this.
  3. Nielk

    Nielk

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    Chronic Fatigue Syndrome?
     
  4. BurnA

    BurnA Senior Member

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    That's what its called in the press in the US isn't it ?
    I am guessing the point of the ad is to make people associate those images with the words Chronic Fatigue Syndrome so that when they read about CFS they don't think about tiredness.
     
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  5. Nielk

    Nielk

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    It is up tp our organizations and advocates to educate and lead the way. The US government health agencies are calling the disease ME/CFS (except for CDC who still calls it CFS).

    The WHO uses the name ME.

    Our goal is to stop the harm that patients have endured for decades - https://relatingtome.net/2016/08/05/hhs-refuses-to-correct-their-wrongful-branding/
     
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  6. mfairma

    mfairma Senior Member

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    Not horrible, but not great either, in my opinion. I'm not sure what the best approach is when trying to advertise at that sort of venue, but I'm not crazy about the reinforcing of the name and think this will lead to snickering more than anything else.

    Given the choice of venue, there probably isn't any way around the name issue. I guess I think the best approach would be starker and more graphic, with a focus on just one person per ad length, highlighting the unmet need and severity of disease through stories of misdiagnosis and suicide.
     
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  7. BurnA

    BurnA Senior Member

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    I think that's the issue. This is aimed at the public masses in Times Square. If it's called ME, I would guess the vast majority would have no idea what the ad is. At least this way they might associate it with something they read in the press.

    If they want to educate people about the correct name then a different ad is required. But better to target health authorities, academics, doctors and journalists with that ad rather than the public.

    Do people look at the ads in Times square ?
    Would you tube ads which force you to watch the first 5 seconds not be more specific?
     
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  8. BurnA

    BurnA Senior Member

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    The more I think about it wouldn't you tube ads be a very worth while experiment in general?

    Imagine when you go to watch a video clip you get to see Ron Davis saying " My son is dying and I need your help " that would be compelling ?
    Alternatively Maureen Hanson wondering out loud how her work correlates with the psychosocial model touted by the UKs top universites ?
    Or David Tuller asking Horton all those questions.

    I think that would create a stir and people would be curious to learn more.
     
    Jan, concepcion, ScottTriGuy and 3 others like this.
  9. mfairma

    mfairma Senior Member

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    I agree. The choice of venue pretty much dictates calling it CFS. You might go a more oblique route by painting a stark picture and teasing the disease by not actually naming it, giving a URL instead, but will anyone at Times Square care enough to look into it later? You also might take a more direct adversarial approach by highlighting the disease through picture or description and then challenging, "The CDC calls it chronic fatigue. Does that sound like fatigue?" A short video or description of a patient so weak they need to be fed through a tube or crying because they cannot brush their hair, followed by a challenge might cause more people to notice. Regardless, I think this video isn't shocking enough.
     
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  10. JaimeS

    JaimeS Senior Member

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    For the Tymes Trust image of the child on oxygen, I would really like that image to say, "does it look like she needs more exercise?"

    In general:

    This is going to run. In Times Square. When the BALL DROPS on NEW YEAR'S. Be seen by literally millions of people. Acknowledging that 'CFS' is serious and not just fatigue by linking images of disease and despair to this crappy name that we are saddled with.

    Are y'all allergic to enthusiasm? This is HUGE.
     
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  11. BurnA

    BurnA Senior Member

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    Its good but can it be better ? We have high standards here :) I think it's fair to ask questions.

    Times square sounds fantastic but how many people engage with ads on Times square ?

    I would say funny/shocking or celebrities are the ways for biggest impact.
     
    ScottTriGuy likes this.
  12. mfairma

    mfairma Senior Member

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    During college, I interned at a small civil liberties NGO. They were at a crossroads when I started there. It was the summer of 2008, which was a couple years after outrage about the civil liberties abuses during the Bush years (largely continued into the Obama years, I'll add, to keep things non-political) boiled over. The idea of virality was a relatively new thing then and lots of different companies and organizations were trying to understand how to create and harness it. The organization, chiefly led by the founder, thought that they could create a viral moment for civil liberties by taking out a full-page ad in the New York Times on the fourth of July and recording videos of people saying they were going to reclaim their rights, or something along those lines. Predictably, it failed to have any real effect, which meant a couple months of time wasted and around $60,000 on the ad. The organization not only failed to understand the factors that shape virality, but was so sheltered in their own civil liberties bubble that they didn't understand that the world had moved on.

    I mention this in part because the ad strikes me a bit as sheltered. My wife just came home for lunch and when I showed it to her, her first reaction was that it might hurt as much as help, because of the images chosen and the way it attempts to appeal for patients. We don't have a particularly photogenic disease, so it is difficult to convey on film what patients feel. Those pictures could quite easily be ridiculed, particularly the first and last. I hope that doesn't come off as unkind; the people willing to share themselves for this ad are heroic and clearly suffer terribly, but the rest of the world might not see in it what we see. To be effective, I think, a different approach is needed, one that approaches the problem from a different angle than how advocacy organizations for other diseases might.

    @JaimeS, I think your suggestion of the tag on exercise is fantastic. That is the sort of direct and adversarial approach that I think could make more headway. It's aggressive, while being playful, and elides to the deep and serious issues that we ultimately want people to understand. Part of why I gave the story above is to highlight that I think this community needs both to understand more deeply where they are to understand how to engage and to be more creative about thinking through how to do so. The exercise tag is perfect in that regard.

    P.S. I wasn't clear from the description from Solve. This ad will play when the ball drops? If so, that further heightens my concern for getting it right.
     
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  13. JaimeS

    JaimeS Senior Member

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    It's great you are working so closely with Solve! Did you help put the video together?
     
  14. mfairma

    mfairma Senior Member

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    The organization I mentioned was chiefly led by its founder and the board of directors was not able to hold her accountable, at least when I first started working there. Through force of personality and aggressiveness, she ran everything. The attempt at virality I mentioned was pushed through chiefly by her, despite my and others' attempts to inject some caution and perspective. The board of directors finally removed her shortly after I left, but they lost two other employees before that happened, one who had just been hired when I started interning there.

    My point is that how you choose to engage, as I've commented to you before, sends messages that attract and deter. Is your post above really a reasonable response to reasonable, respectfully made criticism? My judgment may be harsh, but have I attacked you personally or made any comments that would justify you attacking me personally? And do I not have a right to voice comment if it is not wholly agreeable? Further, if you engage in this manner, how much progress would I really make trying to engage with you and those around you?
     
  15. JaimeS

    JaimeS Senior Member

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    I really thought you'd been working with them on it and were dissatisfied with the result. It's been a long day, so I'm sorry if I misread or misinterpreted.

    But I'm definitely leaving the conversation, now. I'm certainly not responsible for the content of the video one way or the other.

    If you're dissatisfied with the video and you didn't play a role in putting it together, maybe you could talk to Solve directly rather than here on Phoenix Rising. If the people you disagreed with aren't there anymore, you may run into less resistance than you think.
     
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  16. BurnA

    BurnA Senior Member

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    Hutan, mfairma and JaimeS like this.
  17. mfairma

    mfairma Senior Member

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    My apologies, @JaimeS. I took it as sarcasm, which wasn't fair or charitable. I know I can be abrasive!
     
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  18. JaimeS

    JaimeS Senior Member

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    It's ok. I just PMed you and said about myself:

    [​IMG]

    I'm clearly no longer reading / interpreting properly, it's not your doing.

    I've had a rather mad few days, and it's nothing to do with anyone on PR. :hug:

    I really value you guys so much, you have no idea.

    -J
     
  19. taniaaust1

    taniaaust1

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    I personally dont agree. To push any attention onto the suicides at this point may further lead general public and some to connect this illness with depression, we need break from of that kind of thinking. One can highlight severity without having to make a point about the suicides which happen.
     
  20. taniaaust1

    taniaaust1

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    that's a great ad idea. I'd like to see that one.
     
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