Controlling the message after a post goes viral
December 29, 2012 7:37 PM   Subscribe

A stupid and ignorant Facebook post about ichthyosis has gone viral, with over 1 million likes. How do we respond?

I blog about the underlying medical condition, and I'm active with the national nonprofit patient-support organization devoted to this condition.

Today, a post on Facebook went viral (it just hit over 1 million likes). The post apparently appropriated a picture of an affected baby from the nonprofit's website, and put the very unhelpful caption "Please don't ignore!! 1 like = 1 get well soon". The organization has put an official response on its website, and I have written an open letter on my blog. And I'm citing that blog post in my responses.

But there are literally hundreds of responses every minute (it's at over 20,000 comments so far). I don't see any way to step in front of this fire hose.

Even though the picture came from the organization's website, for various logistical reasons, a DMCA takedown notice won't be practical for several days.

Is there any way to get our message out in front of this?
posted by QuantumMeruit to Computers & Internet (18 answers total) 1 user marked this as a favorite
I don't understand what the issue is -- are you concerned about the caption or that a picture was appropriated? Isn't the caption sort of irrelevant if the photo is building awareness?
posted by These Birds of a Feather at 8:02 PM on December 29, 2012

Sorry, it's not really clear what the problem is-- is it that the picture is unattributed? Or they're spreading inaccurate/dangerous information about the disease? Or that it's some kind of donation scam?
posted by threeants at 8:02 PM on December 29, 2012

I guess I'm confused, what's the potential for harm here? Is the post abusive or misleading? This kinda thing happens on Facebook on the regular, and there's not that much that can be done, I don't think.
posted by Sternmeyer at 8:04 PM on December 29, 2012

Response by poster: Well, there's a whole bunch of things going on. There's literally thousands of people commenting with ignorant things, or offering prayers, and it's a picture taken many years ago.

The caption also doesn't identify the underlying condition, so there are people asking what it is. The volume of comments is so high that I can't get the correct information out there fast enough -- it's the "drinking from a firehose" problem.
posted by QuantumMeruit at 8:07 PM on December 29, 2012

I'm sort of inclined to think that this is a Someone is Wrong on the Internet problem, at least to a degree, because it is just impossible to actually counter every bit of ignorance that floats around on Facebook. A better response would be to analyze what goes viral, and come up with your own viral campaign separately. (This would, of course, be only partly successful, because glurgey calls to prayer are apparently irresistible to a certain segment of the population, and that segment doesn't seem to respond as well to actual Science.)
posted by restless_nomad at 8:15 PM on December 29, 2012 [17 favorites]

There's literally thousands of people commenting with ignorant things, or offering prayers, and it's a picture taken many years ago.

1. Those people are not interested in knowing about the underlying condition or learning correct information about it....or take meaningful action about it. This is not an opportunity to educate people.

2. Your organization's photo will be replaced by something else for people to "like," comment on, and pray for/against shortly. This is not an opportunity to build awareness.
posted by headnsouth at 8:16 PM on December 29, 2012 [4 favorites]

Response by poster: restless_nomad, thanks for the link to the xkcd comic. It's especially apropos since it's getting late here.

I guess what I'm really trying to figure out is if there's any way to take advantage of the attention the 1 million "likes" and such have garnered, while it's (sort of) on the minds of random people on Facebook (albeit in a glurge-y kind of way). Everything I can think of just seems like shouting into the wind.
posted by QuantumMeruit at 8:23 PM on December 29, 2012

Write a two or three sentence comment on the Facebook post saying what the baby has and referring people to your website. Then don't think about it again and keep doing your good work.
posted by no regrets, coyote at 8:28 PM on December 29, 2012 [30 favorites]

Make a good and informative post about the issue, and let it go at that. If you have authorization to use the photo that was used in the misleading post, do; a caption like "the real story about this baby" might be a way to tie it in for the people who have seen the misleading post.
posted by Sidhedevil at 8:29 PM on December 29, 2012 [7 favorites]

Is there any way to get our message out in front of this is not more likely, or, reasonable here than any bakery getting "$2 off our Twinkies imitation!" to go viral when the USA Hostess baker went under.

But, few people think twice about these viral whatnots -- likes are cheap-n-dirty, viral likes particularly so -- I notice there are zero -- zero! mentions of it on a FB "Ichthyosis Support Group" with over 1,000 members or on the "Foundation for Ichthyosis & Related Skin Types, Inc." with another +1,000 audience. Also that your own post in response was very easy to Google up; if anybody thinks about this beyond a few seconds, responses and accurate information are easy to come by. I can't even find, with cursory searching, the photo in question.

Now there's this post and a bit of a Twitter response, and knee-jerking about that the hoi polloi are "stupid and ignorant," and the message going out is already out there and it's...that. Not sophisticated or useful.

if there's any way to take advantage of the attention the 1 million "likes" and such have garnered

Shut down the angry response and replace it with more dignified stuff; as is the Google searches for this condition have been shot up with "stupid and ignorant" -- not great for any positive messages in the stir here. Social media and its management are huge businesses nowadays; there isn't an easy amateur fix or D-I-Y instant viral solution. Photos that excite the simple-minded are quite different from accurate information about rare diseases; those two are unlikely to join up anytime soon. is littered with that sort of disconnect.

If it's not just: photo, dumb responses, but photo, bad information attached to photo, wait a bit, and then look at Snopes and the other big "debunking"-type sites, and offer coherent, non-insulting information to those sites for their use. Do keep in mind that absolutely nobody is reading too many of the thousands of dumb responses.
posted by kmennie at 8:41 PM on December 29, 2012 [5 favorites]

if there's any way to take advantage of the attention the 1 million "likes" and such have garnered

This attention is not directed at you, it's directed at an out-of-context pity-meme. There is no front to get in front of, and you have no more angle on this than anybody else throwing their opinion on the fire. As typically happens with comment number 523,039 out of 1,103,327, there's a chance that not a single person will see it, so I recommend sticking to the minimum, a "guys, this is a real thing!" or similar
posted by rhizome at 9:21 PM on December 29, 2012 [3 favorites]

Write some posts that are polite and educational in the comments. Do so every so often, without spamming. Create a "reply" video of your own, so that it shows up in the results. You can do this simply using a PowerPoint presentation that you narrate and then upload it to Authorstream to convert to video and share on youtube. (I think the first one is free.) Just make a simple Powerpoint and read out one of your website pages with some good intonation.
posted by Chaussette and the Pussy Cats at 9:39 PM on December 29, 2012

Ah, the problem is right here: Controlling the message

When something goes viral, you literally are not controlling the message. Just like we laugh at corporate ad drones who lamely try to force their latest focus-group creation to "go viral", as a non-profit you too are unable to actually control the message here, and you need to stop thinking in that frame of mind.

Instead, you need to look at your mission and your organizational goals and try to think about how you can "ride" the viral wave and achieve them. Realistically these can include:
* Vague "awareness", not worth a whole lot
* Attract donations via a customized page: "Give money to the * Foundation and we can help improve treatments/find a cure/send a kid with * to Disney World"
* Get more Likes for your organization page (very realistic, but uptake will be in the single-digit percentages versus the shares of the photo -- and only worth it if you practice a true social media program of regular and interactive engagement with those fans)
* Get a celebrity sponsor (somewhat realistic, but a long shot). It's often alleged that rare diseases get nowhere in terms of funding until they have a celebrity sponsor -- somebody who can show up at a Congressional hearing, say, and get press coverage.

What you won't be able to do:
* Change everybody's mind about what * is. Especially if nobody is ever likely to encounter * in real life except via this viral campaign. It's just going to go in and out of the black box that is the social media user.
posted by dhartung at 11:09 PM on December 29, 2012 [5 favorites]

Well, it is a long shot, but one way you might be able to turn this to the advantage of your cause would be to try to appeal to people who feel a need to get and share "the real story."

In rough form:

"This facebook post has had over 1 million likes from well wishers, the only problem is, its not true! Some vaguely sinister, plausible sounding, but never precisely identified, wrongdoers are taking advantage of all the good hearted people who liked the post in order to enrich themselves in some plausible sounding but vaguely specified way. Please, help get the word out to stop this injustice and help the truly deserving sufferers of ichthyosis by liking and sharing this post and keeping them in your prayers (and if you are really interested, click this link to find out what else you can do). Thank you and God Bless"

[Include a version of the original image, along with some readable text in the image itself that says something like "The real story, don't be fooled"
posted by Good Brain at 11:17 PM on December 29, 2012

Remember when the idiots started circulating the stupid Morgan Freeman meme after Newtown? It's a picture where he's quoted saying things about gun control he never ever said.

A few days later the "Morgan Freeman titty sprinkles" counter meme was created to take advantage of the hype to point out how ignorant everyone was.

You could devise your own meme perhaps and hope that it catches on.
posted by KokuRyu at 12:39 AM on December 30, 2012

Really, the only thing I can see is to drop a message to the original poster politely requesting that they add the name of the disorder and maybe a link to your organisation. With any luck they'll add it and any subsequent shares will have that info included.

But honestly, few of those million odd likes actually give a damn. It's a way for people to demonstrate empathy without actually needing to do anything. Those million shares are people too lazy to click through a link anyway, so you are unlikely to be losing much at all.
posted by Jilder at 2:41 AM on December 30, 2012 [4 favorites]

My understanding (can't find a reference) is that it's a somewhat common practice for people to set up a profile and publish a picture specifically to get lots of likes and hopefully comments as well -- both of which act to increase that profile's visibility score on Facebook. This is why you see all these "like if you think people shouldn't kill this cute puppy" and "comment '#1' to see what changes" picture posts. Later, once the profile has a zillion likes, it gets sold to a company who now has a profile with high visibility and a zillion likes. Now tha company just changes the profile name from "Save The Baby Seals" to "Chrysler LeBaron" and the zillion people who liked and commented on the picture start seeing Chrysler LeBaron pictures in their feeds.
posted by slkinsey at 7:03 AM on December 30, 2012 [5 favorites]

Post a link to this article explaining how this kind of thing is often a scam bait-and-switch.
posted by John Cohen at 10:51 AM on December 30, 2012 [2 favorites]

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