Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Social Media - Community advocacy fail. Why?

Discussion in 'General ME/CFS Discussion' started by Bob, Aug 14, 2015.

  1. Bob

    Bob

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    I don't use Facebook, but I've noticed that we have quite an active community on Twitter.
    Many community members have hundreds of Twitter followers, and some have a few thousand.
    The UK's ME Association has more than 7000 Twitter followers.
    The Solve ME/CFS Initiative has more than 3000 followers.
    Invest in ME has almost 3000 follwers.
    Phoenix Rising has 1682 followers.
    ME Action, despite being formed recently, has more than 1000 followers.

    And there are a large number of individuals with hundreds of followers, and some with thousands of followers.
    And we have a small number of celebrity or high-profile supporters.

    But it's become increasingly clear to me that our community has a lacklustre and disappointing performance on Twitter, in terms of responding to important tweets: Some important Tweets go almost unnoticed, with barely any interaction.

    Favoriting and retweeting is the most simple advocacy task that we can engage in.
    If people see that their tweets are being noticed, and engaged with, it makes them feel rewarded, and it makes them more likely to engage. So it's a simple task that makes a difference.

    If journalists tweet about ME/CFS, then we can show them that there is interest in the subject by interacting with the Tweets.

    I've been really disappointed by the reaction to some Tweets recently. And I don't know why there is such a lacklustre reaction by our community.
    If anyone has any ideas or thoughts about this, i'd love to hear.


    Below are some examples of disappointing reactions on Twitter...

    Dr Leonard Jason's entire team took the chilli challenge and received a grand total of 24 retweets to thank them:
    https://twitter.com/CenterRes/status/626853422046818304

    Pete Bennett, a popular and well-known UK Big Brother winner, received between 15 to 30 retweets for taking the chilli challenge recently:
    https://twitter.com/MrPeteBennett/status/630855788572098560
    https://twitter.com/MrPeteBennett/status/630834523517898753
    https://twitter.com/MrPeteBennett/status/631096392619003905

    Dr Lipkin's entire research team at Columbia University's Centre for Infection and Immunity, took the chilli challenge and received a whopping 15 retweets, 10 retweets and (wait for it - drum roll) 1 (yes - that's just one) retweet to thank them for their efforts:
    https://twitter.com/MicrobeProject/status/620119900757950464
    https://twitter.com/MicrobeProject/status/620331972943048705
    https://twitter.com/ColumbiaMSPH/status/620676739728080896

    Is this really all our community can manage to thank these lovely people for supporting us?
    One retweet is hardly what is called going 'viral', is it?
    If this is the best that our community can do, then can we expect any ME-related news to go viral?

    Can we expect people to be drawn into our community if we respond/react more to negative or controversial events, but almost ignore people when they participate in small but kind actions?

    Below, is a list of tweets about ME/CFS by high-profile journalists that i put together recently. The journalists tweeted about Brian Vastag's letter to the NIH director.
    These are serious journalists, some with huge followings, who tweeted about ME/CFS. But some of the tweets in the list have been 'favourited' only 30 times.
    This is probably the first time most of the journalists have ever tweeted about ME/CFS, and only 30 people in our community have managed to acknowledge their tweets, thank them, or demonstrate that we appreciate the tweets, or demonstrate that there is interest in the subject.
    This was a huge opportunity for us to get ME/CFS noticed by mainstream heavy-hitting journalists, and i think we've achieved a massive FAIL here.
    I'm really disappointed by our response.
    30 retweets to encourage mainstream journalists to write about ME/CFS? Is this REALLY the best we can do?
    https://twitter.com/bobbobme/timelines/623945829573914625

    For example, in the above list, Carl Zimmer, who has a reach of 238,000 Twitter followers, managed to get one of the best reactions from us on the list, and received a grand total of 53 retweets, some of which might be from his general followers rather than ME patients. It's not a response that will demonstrate to him that there is a massive interest in this subject:
    https://twitter.com/carlzimmer/status/620972261244280832

    This is the CII's twitter stream. Their ME-related tweets only ever get very few retweets from us:
    https://twitter.com/CII_Columbia

    For example, this CII tweet has been favourited a measly 7 times:
    https://twitter.com/CII_Columbia/status/620626460353654784


    Go Community! Great work!

    (I'm a bit frustrated by it.)


    So what's going on? Has anyone any ideas? And how can we improve the situation? How can we pull together our online community and get people to respond to online events? Nothing is easier than retweeting or favouriting, so why isn't it happening? Perhaps people don't consider social media an important advocacy tool?


    As just one idea, perhaps we could create a list of big-hitting Twitter and Facebook accounts, under headings such as 'journalists', 'celebrities', 'researchers' etc., and a list of high-profile supporters/patients, to help members of our community find people on Twitter and Facebook? But, actually, I'm not sure if that would help much. Perhaps we need a Twitter account that is used purely to draw attention to tweets that need retweeting or favouriting?
     
    Last edited: Aug 14, 2015
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  2. Snookum96

    Snookum96 Senior Member

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    I don't even have Twitter. I'll start by signing up.
     
  3. adreno

    adreno PR activist

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    @Bob

    I see you've recently taken an interest in Twitter. That's great, but perhaps other patients haven't found the same interest, yet.

    Who is going to retweet those tweets, and to whom? Retweets doesn't matter if you don't have followers. If you want followers, you need to do more than just retweet. You need to continously create content, and this can be a huge undertaking for someone with no energy.
     
  4. Bob

    Bob

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    Of course not everyone uses social media, and it's not suitable for everyone. I hate Facebook and i refuse to use it. I'm not trying to guilt-trip anyone; I'm just venting my frustration. We do already have a large amount of community activity on social media, and it is a useful advocacy tool. My post is directed at people who are interested in exploring the reasons why our community isn't flexing its muscle on social media, and exploring how we might increase our social media voice. Perhaps I should have placed this thread in the advocacy section of the forum? And perhaps the post could have been more positive and written with a less frustrated/accusatory tone?

    Retweeting or simply 'favoriting' sends a message to the person who has written the tweet, so you don't need followers for it to make a difference. It sends an acknowledgement to the tweeter. It's like saying 'thank-you' etc. 'Favouriting' a tweet is the simplest advocacy task anyone could possibly engage in. It's not a difficult undertaking for anyone able to access the internet.

    But like I said, I'm not trying to guilt-trip people into setting up Twitter accounts. That wasn't the intention of my post. We already have a large and active community on Twitter. I just thought it was an interesting to issue to raise, with a view to exploring how we might maximize our community's voice, power and leverage on social media.
     
    Last edited: Aug 14, 2015
  5. Esther12

    Esther12 Senior Member

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    Thanks to everyone doing anything to try to help. I suspect a lot of people use social media to socialise rather than engage in any sort of activism. I don't really know.
     
  6. Sean

    Sean Senior Member

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    I am not on Twitter at all, and only have a Facebook account to vote for the occasional charity thing.

    Maybe I should be on them more, for ME/CFS stuff at least. (Though I do not like Facebook in particular, and there are only so many spare minutes in a sick person's day.)

    Maybe there are other ways of doing this. Or it needs a more coordinated mix of approaches. Or something.

    ???

    But yeah, it is a problem, and in this day and age we probably need to have at least some kind of presence on those media.

    I suspect it is related to and complicated by the problem of a frequently fractured patient community. Understandable in the circumstances, and not entirely our fault, and there will always be legit differences to work around, but still we hardly speak with a (relatively) united voice.

    I don't have any immediate suggestions about how to deal with all this. But it is a serious and growing problem, especially if we are going to make any ground on the funding issue.
     
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  7. Seanko

    Seanko Senior Member

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    @Bob Twitter users are more varied than this forum.

    There is the Spoonie community who tweet about ME/CFS, Fibromyalgia, Lyme disease, POTS and other illnesses

    You have the younger, mostly female audience who will write about lifestyle issues such as diet & beauty.

    This is in addition to the individuals you find here.
     
  8. adreno

    adreno PR activist

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    So you're saying that they will appreciate if we set up a bunch of dead-end twitter accounts, and retweet their tweets to nowhere?

    I'm just trying to get a picture of your strategy, because it's not clear to me.
     
  9. Scarecrow

    Scarecrow Annie Gsampel

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    @Bob

    I'm sorry but I have no real answers. I've only recently joined Twitter and I'm still a twit, definitely not a tweeter. I tried to retweet Brian Vastag's article but I don't think I did it right.

    All I can say is that I'm not in love with social media. Up to a point that may be an age thing but I think it may in part be an introverted trait - I find modern communication to be sometimes overwhelming and intrusive.

    It's also about understanding how the various media work. Now, I know that the forum is also social media - but the forum has structure and I understand it.

    Thank you. That's what I mean. What happens to my tweets? Who sees them if no one follows me?
     
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  10. Mark

    Mark Acting CEO

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    Thanks for highlighting this Bob, I agree it is a massive gap and a missed opportunity so far, so it's strategically important to try to increase engagement.

    We have a huge gap here on PR in terms of our use of social media. We have accounts on Facebook, Twitter, LinkedIn, YouTube and Google+, but so far all we've really done with them is post our articles (or links to them) there. I'm sure there's loads more we could be doing, but I'm not a big user of social media myself so I don't really understand well enough what we should be doing. We've needed a social media co-ordinator/evangelist for a long time...

    I suspect, from previous conversations here, that most of our members here, almost by definition, are a different constituency. Most of us aren't big social media users, we're forum users (which is similar, but different). There's a large ME/CFS Facebook community, I'm told, but that's probably a separate constituency as well. So part of the problem might be finding how to reach out to a new and untapped community on Twitter, in particular.

    I would love to see us making greater use of Twitter, and Facebook as well. The idea I have in mind for that is that we could have a team of people authorised to post on those accounts, on behalf of Phoenix Rising, using something like TweetDeck (I think there's an easily-affordable paid version that would allow us to manage permissions for a team of people to use the same twitter account). My idea would be that, with a small team, using the information posted on the forums, and perhaps a dedicated forum thread or two where people can post the news of the day, we could tweet and post on Facebook with one-line summaries of the major ME/CFS news, research and advocacy stories, and we could re-tweet and highlight on Facebook everything else that's going on in the worldwide ME/CFS community. Maybe we could become a kind of central clearing-house for the news...I would like us to be the go-to place for all the latest ME/CFS news, on every platform. If we had a large enough team, and a simple, efficient workflow for gathering and posting news, I think that should be achievable for us...if there were enough people interested in doing this...
     
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  11. Sasha

    Sasha Fine, thank you

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    I don't use Twitter or FB (except for online charity voting, under a false name) - I want to avoid unsolicited social communication to protect my limited energy reserves.

    But your point, @Bob, was that there are already thousands of PWME on Twitter - as evidenced by those big Twitter followings of the MEA, etc. - so why aren't they retweeting for advocacy purposes?

    Good question.
     
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  12. Mark

    Mark Acting CEO

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    Since most of us seem to be twitter novices and many of us don't really understand it, maybe a PR article about social media engagement might help? An article could explain how the various social media platforms work, highlight what ME/CFS resources currently exist on those platforms, and encourage readers to sign up and show them how to use them for advocacy purposes. That might give it a little kick-start.
     
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  13. Sasha

    Sasha Fine, thank you

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    Good idea, Mark, if somebody could write it (I don't have a clue about this stuff).
     
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  14. Bob

    Bob

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    Good idea, Mark. I'm not feeling up to doing anything like that right now, but it could be a medium term project for me. Or I'd be happy to help anyone else inclined to write such a blog.
     
    Last edited: Aug 14, 2015
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  15. Bob

    Bob

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    Yes, precisely.
     
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  16. adreno

    adreno PR activist

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    Likely because most of them are dead-end accounts. They are not content creators. Their twitter accounts were set up to receive news and updates. Retweeting anything when you have no followers makes no sense, so people don't do it.

    Favoriting tweets would make sense, though.
     
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  17. Scarecrow

    Scarecrow Annie Gsampel

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    Great idea. :thumbsup:
     
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  18. Bob

    Bob

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    It's definitely not purely an age thing. I know people who love social media and I know people who hate social media, regardless of age. I think it's more of a temperament/personality thing. For example, I love Twitter but I hate using Facebook because Facebook doesn't suit my needs or personality. It's also a case of familiarity. Social media is very confusing when you first sign up - you don't know where to start and you don't know how it works. People who are tech-savvy find it easier to get started.

    As for being an introvert, that isn't necessarily an issue, depending on how you make use of your social media account, and how you run your account. For example, I have an anonymous Twitter account that I use for general news and politics. I mainly use it in a passive way, as a source of news. In other words I use it in the same way as you would use a news website. But I can also use it to e.g. respond to political tweets with adequate anonymity. And I don't use that account socially. (Twitter is infinitely adaptable to your own needs, and you don't have to post pictures of your cat or your latest sandwich.) I also have a more social account that I use for ME related activities.

    It depends. If no one follows you then your general tweets won't necessarily be noticed. But you can respond to other people's tweets, and they will be seen by the person you are responding to (unless they are a mega celeb). Also, if you respond to a tweet then your response will often be seen by the other person's audience who will, in turn, often respond to your tweet. This can start up many interesting interactions with complete strangers. You can also broadcast out to the entire Twitterverse using hashtags, in which case a large number of people might see your tweets even if you don't have any followers. So you can start using Twitter without followers and you can still have fun. My anonymous account has 200 legit followers but I've never actively set out to gain followers. I use Twitter because it's a rich source of information.

    But I'm not trying to persuade you. I'm just providing info. I wouldn't bother with it if you aren't inclined to.

    But my opening post highlights a specific issue: the simple act of retweeting and favouriting. It doesn't matter if you have an audience to make use of the 'favourite' and 'retweet' facility. Instead, it sends a positive measure to the person whose tweet you are favouriting and retweeting whether they follow you out not.
     
    Last edited: Aug 15, 2015
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  19. Bob

    Bob

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    Actually, it does make sense because people like to see their tweets retweeted whoever is doing the retweeting. It's about numbers. The person who sent the original tweet will notice all the retweets and favourites. For example, each interaction is recorded and registered by the Twitter analytics facility, and the info is fed back to Twitter users. The tweets with the most interactions are highlighted. So all interactions count.
     
    Last edited: Aug 14, 2015
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  20. adreno

    adreno PR activist

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    Yes, I understand that. But try to understand the psychology of the basic user. For them, retweeting (sharing) something when you have no one to read it, makes no sense to them.
     

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