Social Media - Community advocacy fail. Why?

[Tom Kindlon]

Like Bob, I have another account for non-ME/CFS stuff. I use one browser (Chrome) for my ME account and another browser (IE) for non-ME account. I don't have to log in and out to do this so don't find it much work. Might not work so well on a phone.

@TomKindlon

 

[Tom Kindlon]

I plugged this thread on Twitter:
https://twitter.com/TomKindlon/status/634343654937726976

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@TomKindlon

 

[Tom Kindlon]

Twitter has added a relatively new feature in recent months: when you re-tweet, you can add in your own comment with a photo of the original tweet underneath.

This allows one to make a longer point in a tweet. Also it allows one acknowledge other people's tweets. I more often now RT somebody's tweet and put my own comment rather than writing a comment from scratch. I might put the country the tweet pertains to in my comment so people can more quickly see whether it might be of interest to them or not.

@TomKindlon

 

[Tom Kindlon]

Note: with the new system of comments when RTing one doesn't, I think, necessarily see the full amount of RTs of messages in the counts under messages i.e. the number doesn't count tweets where people RTed and then put their own comment. Though the person who did the tweet will see it which is important because, as Bob says, it is nice to see some "action" on one's tweets.

@TomKindlon

 

[Bob]

I plugged this thread on Twitter:
https://twitter.com/TomKindlon/status/634343654937726976

Thanks Tom. BTW, your link is broken in your post. I've corrected it in the above quote.

 

[Bob]

Twitter has added a relatively new feature in recent months: one you re-tweet, you can add in your own comment with a photo of the original tweet underneath.

Yes that's a great new feature. I'm still getting the hang of using it.

Note: with the new system of comments when RTing one doesn't I think necessarily see the full amount of RTs of messages i.e. one won't see tweets where people RTed and then put their own comment. Though the person who did the tweet will see it which is important because as Bob says, it is nice to see some "action" on one's tweets.

Yes, you're still notified about it, so it still counts.

 

[Bob]

Not sure if you mentioned this somewhere else. But here might be something to make things easy for Phx Rsing members. Have some moderators create public lists under Phx Rsing twitter account. Anyone can follow a public list. So, that might help all those who are new at starting twitter about finding the news to follow so they have an easier time retweeting, and getting started. Then they won't have to expend energy discovery/creating their own lists, and will gradually grow their own following without much effort.

Yes, that's an interesting idea. But I'm not sure if we'd be able to decide/agree what should go on the list and what should not go on the list so it could be a bit tricky.

 

[Tom Kindlon]

Thanks Tom. BTW, your link is broken in your post. I've corrected it in the above quote.

Thanks. Have fixed it now.

 

[Tom Kindlon]

By the way, we got #SevereME trending on August 8 (probably not worldwide and was only for maybe 20 minutes). Also again briefly on August 9.

@TomKindlon

 

[Tom Kindlon]

It can take a while to build up a following on Twitter.
You probably need to follow at least some people to get going. I let my account slowly build up for a while before starting to tweet more regularly (though that wasn't really a deliberate strategy, I just got more enthused by Twitter after a while).

@TomKindlon

 

[Tom Kindlon]

I appreciate that you can tag people on twitter, and reach a wider audience. But, social media is more than retweeting or favoriting. It is about replying, commenting and posting original content. Interacting, engaging, and building a following. And this will take more time and effort. Without creating interesting content, you are not going to gain a lot of followers.

People (as I hear it) seem to argue that followers are not that important. I disagree. Remember that there are algorithms in place that decide the impact of tweets. And when you retweet a tweet to a representative or organization, remember that they (like people here) are likely receiving more posts than they can read. So it becomes about priorities and impact.

Whose tweets are influencers and decision makers going to be reading, engaging with, or reacting to? It is likely to be high impact twitter accounts with many followers that can gain influence this way. So the way I see it, it would be better to have a team of dedicated people working on building one (or a few) high impact accounts, rather than trying to flood the twitterssphere with retweets from lots of low impact accounts.

I don't think Twitter uses algorithms much the way Facebook does. One tends to get all messages in one's feed (though maybe the list of what happened when you were away may be influenced by the followers, I'm not sure).

Similarly, in the notifications section, one gets all feedback, whether the person has no followers or has lots of followers (from what I can see).

@TomKindlon

 

[Tom Kindlon]

1. They are usually videos. I check things before RT and may not want to watch a video at the time (on consideration people eating chillis is uncontroversial and I could RT without watching!).

Yes, a lot of people don't look at videos. I get a lot more RTs of ME awareness images than videos (the difference is possibly even more noticeable on Facebook).

@TomKindlon

 

[Tom Kindlon]

Just brain-storming here:
On the idea for a thread or threads of possibly interesting tweets, perhaps one could have a submission thread and if a particular tweet/post in thread gets a certain number of posts (e.g. 3? 5?), it then gets move to a main thread. This might keep the numbers of tweets more manageable and mean there was some quality assurance. I'd be more likely to look at the thread if there was some "quality assurance" like that.

People could still watch the submissions thread if they wanted.

@TomKindlon

 

[Tom Kindlon]

I think a forum like Phoenix Rising is very important for discussion esp. in-depth discussion. Also if one wants to debate issues with somebody, I think it works better than Twitter.

 

[Tom Kindlon]

There was one very argumentative account who was active a few years back who has now gone for Twitter. They're gone a while now so don't look like they're coming back.

Now discussions about ME and ME/CFS on Twitter are more supportive although the odd person (I can think of two in particular) will occasionally criticise people for using ME/CFS. But it's not incessant the way the other account was.

 

[Tom Kindlon]

What I'm thinking is that rather than having a hub and trying to draw people's attention to stuff that way, starting small and trying to draw big names to it, and which requires people to be interested enough to look for those hashtags or whatever. Would a better idea be to for those able and willing to instead tweet or share stuff with popular public figures and ask THEM to retweet it etc. instead? Rather than waiting for big names to be drawn to stuff because of how awareness has spread, start by asking them to help us spread awareness instead? So try and use popular personalities own, established, popularity to draw attention to things like petitions which are easy for anyone to skim and sign, or the chilli challenge which, like the ice bucket challenge requires no knowledge of the actual disease in order to participate in and share?

My guess is that people with big twitter followings get large numbers of people tweeting them or mentioning them in tweets and so may not read a lot of the notifications.

Currently, some people have been sending tweets on the Chilli ME challenge asking them to do it (which is probably more demanding for the big name than you have in mind). I think the odd one has re-tweeted a message.

So no harm doing it but certainly no guarantee it works.

 

[Tom Kindlon]

For some people with ME/CFS, including some people who are severely affected, Twitter is the main way they access the internet. It can be fairly low energy depending on how one uses it.

@TomKindlon

 

[Jenny TipsforME]

Yes, I often have difficulty reading but can usually access twitter.

There's a new Highlights feature (on the app anyway) this will show you top tweets or people several people you follow have started following. Having a look at this means you're likely to see most interesting or controversial tweets quite easily. There's also a "while you were away" bit. It's starting to get easier to keep track of twitter with these improvements. It's not as in the moment as it was.

 

[Keela Too]

I keep reading the title of this thread, and I don't I agree.

Sure we could develop our advocacy further on social media, but we are FAR from failing in my view.

@keelatoo on Twitter
Sally K Burch on Facebook
Just ME - Facebook page

 

[Jenny TipsforME]

Yes I think "failing" is a bit harsh too but given the numbers of people in the world with ME/CFS/SEID, twitter could be a lot more effective for very little effort on an individual level. Eg about a month ago I automated my List MEcfs to add the accounts of anyone who tweets with #MEcfs and I think it currently has less than 2000 people in it. There are probably more pwme in the city I live in. Part of the problem is we use so many different # for various passionately held reasons. Phoenix Rising may have the clout to inject a little organisation into the effort.

BTW #MEawarenesshour is probably worth mentioning. I keep forgetting/being ill at the time but it's every Wednesday 8-9pm GMT.