Social Media - Community advocacy fail. Why?

[Bob]

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've never suggested that we do that. I wouldn't like that type of dishonest advocacy. I'm interested in stimulating the existing Twitter users into action.

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

I don't have a strategy. I'm highlighting an issue. But I think my opening post explains my thinking quite clearly. I'm suggesting that interactions on social media count, and that perhaps our community could have a more effective, higher profile and better coordinated social media imprint.

 

[Bob]

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.

But we have no more 'favouriting' taking place of important tweets than 'retweeting', so I don't think the issue you're highlighting is the problem.

The problem is the total lack of interaction with important tweets. For example, Pete Bennett (popular Big Brother winner) has had a small handful of Twitter users send tweets to him to thank him for accepting the chilli challenge and for supporting our community. Perhaps up to ten people have sent him tweets to thank him, from our entire community! Roughly 30 have favourited his tweets. (It takes a single click to 'favourite'.) That's a dismal response by any standard. So how do we change this? If ME patients can do one thing, they can use the internet!

 

[justy]

I think part of the problem has already been highlighted - many forum users are not going to be Tweeting. To me Tweeting is something people with busy, energetic, work centred lives do, or celebs with loads of followers. A middle aged woman who lays in bed all day is not really my notion of a tweeter - and that is me!

I sometimes go on twitter to follow tweets from a conference, but that is about it. I think for most PWME, being active on a forum or on FB is more than enough effort - I personally couldn't deal with yet another social media platform, or with learning how to use it. PR members particularly have a huge forum and community to get their heads round that can take up ALL available energy.

Being a rural, housebound, middle aged mum who doesn't work or socialise means I would have zero followers and then wouldn't really know what to do from there -I imagine many of the surrent M.E followers are in the same boat. Mayev they signed up for something lieka conference, or to read M.,E updates from say Invest in me but don't really tweet themselves.

Its the same old problem when you are trying to get seriously ill people to do it all for themselves...

BTW I think your ideas Bob are all good - my remarks are not a criticism or negative, just my attempt to answer ypur question. sorry for typos - brain not firing today.

 

[justy]

From reading your last post above. I don't know how twitter works - how do I know all these things are going on that I COULD THEN RE TWEET? there are so many questions in my mind about how it works, how you monitor who said what when etc that it boggles my poor mind and probabaly does the same to a lot of those other people who have followed M.E orgs. (or am I just a luddite?)

 

[Bob]

From reading your last post above. I don't know how twitter works - how do I know all these things are going on that I COULD THEN RE TWEET? there are so many questions in my mind about how it works, how you monitor who said what when etc that it boggles my poor mind and probabaly does the same to a lot of those other people who have followed M.E orgs. (or am I just a luddite?)

Society media is confusing for novices, but there are already many very active Twitter users, so I'm not attempting to change things by recruiting more Twitter users from this forum. The existing Twitter community should be an adequate resource. I thought there would be more Twitter users on the forum, but it looks like there may not be so many.

 

[Bob]

Please note that this thread wasn't intended as an attempt to recruit any of you onto Twitter, and I'm not trying to make anyone feel guilty for not using Twitter. Far from it: I don't use Facebook and I never intend to. I just wanted to explore ideas in relation to coordinating existing Twitter users so that our community makes better use of the advocacy tools at our disposal. I thought there would be more Twitter users here to explore this with. Even so, some of you might be tempted to try Twitter, and I would encourage it because it adds quality to my limited life. There seem to be interesting preconceived ideas about Twitter here. Please drop those ideas because Twitter is infinitely adaptable to your own interests and needs.

 

[Bob]

I think part of the problem has already been highlighted - many forum users are not going to be Tweeting. To me Tweeting is something people with busy, energetic, work centred lives do, or celebs with loads of followers. A middle aged woman who lays in bed all day is not really my notion of a tweeter - and that is me!

As I mentioned earlier, I'm not attempting to recruit Twitter users.
But, just for your information, your notion of Twitter is way of the mark!
All sorts of people use social media for all sorts of reasons.
Lots of ME patients use it, and I'm hardly one of those busy people with work centred lives.
We've recently had a severe ME awareness campaign on there where people have been tweeting photos of themselves or their loved ones. All bed bound.
e.g. Whitney Dafoe's mother had recently started using Twitter.
There is a vibrant ME community on there.
So my complaint isn't a lack of Twitter users from our community.

Being a rural, housebound, middle aged mum who doesn't work or socialise means I would have zero followers and then wouldn't really know what to do from there -I imagine many of the surrent M.E followers are in the same boat. Mayev they signed up for something lieka conference, or to read M.,E updates from say Invest in me but don't really tweet themselves.

Sure, but if Twitter takes your fancy, then it quickly becomes very interesting with or without followers. It's not important to have followers to get started. Sometimes I post tweets and sometimes I use Twitter passively, as my mood takes me. There are no expectations on Twitter - You can simply enjoy it passively or anonymously or as a research tool or news steam. Its potential uses are almost endless. You can use it anonymously as a research tool or news stream, just as you would use Google or a news website. No followers needed.

 

[Bob]

BTW, I use one of my Twitter accounts to follow a wide range of subjects that I'm interested in, e.g.: general news, politics news, technology news, science, environmental issues, etc. I use it almost entirely as a news stream, but I do interact with random tweets. I've accidentally had brief conversions with a range of various journalists and celebs, mainly in relation to politics. And that's without having any offline friends knowing about my account. It's entirely anonymous and I started with zero followers. So if you want to try it, please don't be daunted by any lack of social contacts. If you take to it, and enjoy it, you'll quickly find people to interact with. But it's obviously not going to be everyone's cup of tea.

 

[adreno]

Still, we have no more 'favouriting' taking place than 'retweeting', so I don't think the issue your are highlighting is the problem. The problem is the total lack of interaction with important tweets.

You might be right. However, as you said, people feel rewarded when their tweets are shared or liked, and I suspect that twitter users who have no audience simply do not engage so much on the platform because it offers no reward. Instead they turn to platforms where they have an audience (facebook, etc).

The good thing about posting on forums is that there will always be someone reading it

 

[Bob]

You might be right. However, as you said, people feel rewarded when their tweets are shared or liked, and I suspect that twitter users who have no audience simply do not engage so much on the platform because it offers no reward. Instead they turn to platforms where they have an audience (facebook, etc).

I know it doesn't suit everyone, but there is a very active community of ME patients and supporters on Twitter.

 

[Keela Too]

Just as a point of interest. I get twice as many hits on my blog by sharing a new link on Facebook than I do through tweeting. (I tweet as @keelatoo ).

Twitter is very transient and in the moment. The #MEawarenesshour tagged posts are good, and I get some extra twitter traffic that way... Of course I'm sharing loads of other links, and RT-ing others as well, but I can't see the results of those shares, that the way I can when I look at my own blog stats.

I quite like twitter... but probably spend too long on it... but then I'm physically very inactive, so I feel this is something I can do to be proactive.

 

[Bob]

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...

Sounds good to me.

 

[Kati]

Hi @Bob

i have not read the full thread but here are a few thoughts.

1)i cannot read my entire twitter stream as I follow around 2000 people. The stream is too large to read everything
It means the tweets worthy of retweeting sometimes get lost. Hashtags make it easier to find content but then some refuse to use one or the other hashtags used for our disease. Personally I use MECFS because it uses the least # of characters and I use it for consistency with my non ME contacts.

Eta #MEAwarenesshour- are you kidding? Half the characters are now gone.


2) One need to be well aware of their audience. Who are you talking to on twitter? Who are your followers? While I have some followers who have ME, many of my followers are from outside the smaller community but arehealth care related. People I have met through twitter chats. Philanthropists. Biotech people. Science people. Physicians. i tweet to educate, and I tweet to insert ME in the bigger health care discussions. Some tweets are only relevant to our community but not to my audience.

3) I really appreciated a tally of all of those tweets relating to the letter to Dr Collins. It made for easy advocacy. These tweets, I will retweet and I will engage with them. Perhaps we could have threads pinned with social media alerts.

4) Facebook is basically for patients to interact with each other. We need to get outside our community. We need to speak directly with the decisions makers and influencers. Twitter can do that.

 

[adreno]

1)i cannot read my entire twitter stream as I follow around 2000 people. The stream is too large to read everything

Why would you subscribe to more than you can read? And is it just random which tweets gets through the noise?

Sounds like it can quickly become a full time job to follow streams on Twitter. The longer you are on it, and the more people you interact with, the bigger your stream. And it's only going to keep growing.

 

[snowathlete]

Read most but not all of this thread.

I think you have a point Bob.

I use Twitter but I still missed a lot of this stuff. I tend to dip into Twitter for five minute to an hour a few times a week and because I follow a lot of people it means that I probably miss a lot of tweets (I'm going to have to quietly have a cull, I think).

I do think we as a community need to do better and take advantage of this opportunity. Especially important to support and thank those who support us. The Chilli ME Challenge could go viral, all it needs is one person who is really popular to do it and it could snowball. I'm already impressed with the reach it has achieved already to be honest, but thats not to say it can't achieve even more.

That list of tweets by journalists is super handy. Thanks for taking the time to put that together, I am going to try and work my way through that list thanking them.

For those who perhaps haven't tried Twitter yet, it is my fav social media and that's generally because I find social media too much like hard work due to the information overload. That's why Twitter is good, in my opinion, because it is managable short chunks of information and its very simple to use.

I dont just use it for social media, I use it to share my blog and also to follow stuff I am interested in besides ME/CFS, and to quickly see what's going on in the outside world without too much effort. Getting a following happens pretty organicly if you use it every once in a while and you get a suprising reach with some tweets. Its not just about how many followers you have either, there are lots of other factors that come into it - Twitter works with algorithms and do the more popular a tweet the more likely it is to show up in people's feeds, and part of that algorithym will be how many retweets and favorites a tweet has - so even if you have no followers (that changes quickly if you follow a dozen people yourself anyway) then it does genuinely have an impact on tweets getting seen by other people (potentially tens of thousands more) if you help by clicking retweet and favorite. Most people on Twitter are not content creators, in my view, but without them Twitter woudlnt work.

I think an article on twitter would be good. I am sure there must be dozens out there on the net already that are very good at explaining how Twitter works, but an article on PR, focused on the ME/CFS communities use of it would be very useful, I think.

 

[Kati]

Why would you subscribe to more than you can read? And is it just random which tweets gets through the noise?

Sounds like it can quickly become a full time job to follow streams on Twitter. The longer you are on it, and the more people you interact with, the bigger your stream. And it's only going to keep growing.

Twitter is an exchange. You tweet some so people can read you, and you retweet stuff that is important to others. It is also an exchange of imformation that is relevant to you.

By creating connection with people, when you like their content, somehow there is a higher chance they will read what you have to say. You are creating a circle of influence.

For me and it may not be the same for everybody, I try to reach outside our community, so physicians, journalists, decisions makers start to understand there are diseases out there which have been left behind.

If you look at people who have 15,000 or 150,000 followers, it means all these people are interested in what that person has to say.
Starting following people and retweeting their stuff, interacting with them, discussing content relevant to you and to your circle of influence, can be of help in the long run. Educating people one person at a time, from your bed or from your couch.

This my friend is the basis of social media. We can use social media to influence de isions and influence the public's opinion.

i will also add (and mentioned it before) there are twitter chats out there where medical professionals, ethicians, decision makers gather at a set day and time, usually every week and discuss health topics. google health care tweet chats to look at the schedule.

 

[TeresaBCN]

I agree with Kati above. I joined twitter 9 months ago. The problem is, if you follow 200 people/organisations like me, you get hundreds of tweets a day and so miss a lot, plus I only go on it a couple of times a week for short intervals so only see a small section of everybodies tweets. I imagine that's a simliar situation to most people. That's just the way twitter is. I also use the hashtag #MECFS and no others.

 

[Bob]

Thanks Kati. Have you tried using private 'lists' on Twitter yet? You can create your own lists, and they work in the same way as your main Twitter stream, but you can choose who to place into the list. They can help if you follow a large number of people but you want to focus on a smaller number of Tweeters for regular updates or for specific issues. If it's a private list, no one knows if they've been placed in the list, or excluded, so it's a useful tool that you can use without upsetting any of your followers.

I really appreciated a tally of all of those tweets relating to the letter to Dr Collins. It made for easy advocacy. These tweets, I will retweet and I will engage with them. Perhaps we could have threads pinned with social media alerts.

Thanks Kati.

What do you mean by "threads pinned with social media alerts"? Do you mean to set up a dedicated forum thread into which we can place important social media alerts for sharing? I think that could be a very good idea.

 

[Bob]

Why would you subscribe to more than you can read? And is it just random which tweets gets through the noise?

Sometimes you follow people out of politeness, or to gain followers, because it's a two-way interaction. Some people end up following tens of thousands, or more. But that doesn't mean that you have to be overwhelmed - there are many ways to navigate Twitter. As I mentioned to Kati, Twitter lists are one way to do this. As @Kati and @TeresaBCN mentioned above, using hashtags (e.g. #MECFS) is another way. Twitter is very adaptable, and there are many different ways to use it.

Sounds like it can quickly become a full time job to follow streams on Twitter. The longer you are on it, and the more people you interact with, the bigger your stream. And it's only going to keep growing.

Haha, Twitter can become slightly addictive, and it can take up a lot of time if you want it to. But only if you want it to and if you enjoy it. Simply put, it's a source of entertainment, and people enjoy using it. It's not a chore, and you don't have to diligently read every tweet that is tweeted by the people you follow. There are many ways to engage.

 

[Bob]

I use Twitter but I still missed a lot of this stuff. I tend to dip into Twitter for five minute to an hour a few times a week and because I follow a lot of people it means that I probably miss a lot of tweets (I'm going to have to quietly have a cull, I think).

As I mentioned to Kati, you can use private Twitter lists to replace your main Twitter stream, or in addition to your main Twitter stream - this avoids the need for a cull. Lists can be used so you won't miss the Tweets from the accounts that you'd like to follow closely. I find private lists very helpful - and they're worth playing around with if you use Twitter regularly.