Social Media - Community advocacy fail. Why?

[Bob]

Two new threads for anyone interested...

Social Media thread - interesting bits and pieces

Social Media thread - advocacy action alerts

I hope the threads are self-explanatory.
Any thoughts, feedback or suggestions welcome.

 

[batteredoldbook]

>Our community has a lacklustre and disappointing performance on Twitter

When I joined Twitter I had visions of "one tweet to rule them all" but in fact the viral chain reaction is very hard to initiate, especially outside the M.E community. People are highly selective when they retweet and often when they favourite too. A retweet is a huge honour. That's not a bad thing.

>Favoriting and retweeting is the most simple advocacy task that we can engage in.

I agree and I think that it is a very valuable contribution to the debate. I hope people understand this.

>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.

I certainly felt this way. I used to try to achieve 10 retweets each day and when I had, I felt, useful. The latter is very important to me personally, so yes, I greatly appreciated retweets.

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

I agree, but I don't think it is all bad news, M.E patients have air superiority: it is no longer trivial for professionals or journalists to spout cobblers about M.E without fair & moderate challenge. This was one of the main reasons that I started tweeting. I felt people were publicly talking trash about us as a group and I wanted to help to address that imbalance. I hope more people will do this.

>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.

I found summer to be a low point for M.E tweeting. I felt greatest sense of community around Chrimbo. Great tweets do however get missed randomly and well, I don't see much harm in repeating the message. Also, if it's super-important: people are very kind if you simply ask them to pass on a particular message.

>Is this really all our community can manage to thank these lovely people for supporting us?
...
>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 agree, defo, community should positively appreciate the efforts of those who manage to see past the smoke and mirrors and through to us as human beings. I too would class this as a community #fail.

>One retweet is hardly what is called going 'viral', is it?

Yeah, though I think a quite few people read without retweeting. Maybe this is because we live in a society where people consider themselves to be consumers/end-points as opposed to links. In my experience response to tweets ebbs and flows. Whether a tweet is passed on is the result of both a positive desire to spread the message and the contrary desire to suppress it. There are times, when others freely give their energy to you, that the word seems to pour out from your fingers and there are times when you feel absolutely alone and that you are wasting your energy.

>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?

I think it is very easy to get drawn into the excitement of battles and events but I do think people notice kindness.

>So what's going on? Has anyone any ideas? And how can we improve the situation?

Small groups within the community can be very powerful. They are also a way to ensure that tweets (and the energy required to write them) are not wasted. Eg: I think it is fair to suggest that @TomKindlon, @JaneCColby and myself were in agreement in regard to many key issues in M.E. We were therefore each interested in what the others were saying and without discussion naturally supported each other. It is tempting to view Twitter as a broadcast medium but it's not, it's social media. The idea is to talk and through talking pass on vital information. Friendship groups are I think vital to spreading the message on Twitter. I tried to reply to every single person who took the time to write to me.

Aside from this, choose a common hash tag and, excepting special events, stick to it.

>How can we pull together our online community and get people to respond to online events?

Live tweeting was working very well last time I looked, (which was a few months back). I hope it still is. It's one of the greatest strengths of twitter as a medium for us. I also think M.E patients need, and look for, a timely and solid response on Twitter to counter some of the more extreme stories which appear in the UK media.

>Nothing is easier than retweeting or favouriting, so why isn't it happening?

On ME Awareness day, 2014 I had about 400 retweets. This seemed to me to be a lot. I think this happened because: 1) The community was active and engaged. 2) I was telling it how it was (even back in my 90s website, I noticed that M.E folk prize truth above all things). 3) The community was working together as one: The success wasn't mine. I was surfing a wave of feeling that was already there.

>Perhaps people don't consider social media an important advocacy tool?

I found social media to be unbelievably powerful. It took me from this small room into London and face to face with Simon Wessely. Social media taught me far more than I wanted to know about UK M.E. More than this, M.E patients often wake at random hours yet there will pretty much always be someone to talk to, someone who understands. This is, in of itself, the greatest gift of social media to M.E folk. Overall, I don't think that M.E needs to prioritise PR. I think M.E needs truth. Retweeting is an important part of the process whereby truth is (often brutally) selected by others. I think the more people involved in tweeting & retweeting the truth, the quicker progress will be made.

>Perhaps we need a Twitter account that is used purely to draw attention to
>tweets that need retweeting or favouriting?

@TomKindlon already provides this service. Anyone would be hard pressed to exceed his ability & effort.


Take care,

@batteredoldbook

 

[Bob]

@batteredoldbook, thanks so much for taking the time to respond so thoroughly. Your comments are really interesting and useful.

BTW, to everyone else, I think I'm right in saying that @batteredoldbook is an example of someone who discovered (or was first drawn towards using) Phoenix Rising via social media. Which I think is a nice demonstration of the two-way traffic between the forum and other community outlets.

He mentions Tom Kindlon who is a frequent forum user and also runs a very useful and prolific news and advocacy service via his Twitter and Facebook accounts.

 

[Debbie23]

Like many others I dint have social media pages myself. While I will browse them occasionally, i don't have FB or Twitter or anything else like that because energy is a finite resource (don't we all know it!) and I just don't have enough to juggle several accounts and interact on all of them. I have thought of getting a FB page to share stuff but tbh my family do that anyway at times so for me it doesn't seem like the best use of energy when mine is so limited overall.

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?

I've often seen when browsing famous people's twitter feeds like youtubers, actors, musicians, politicians etc. sharing stuff simply because other people have made a polite request for them to do so. Obviously you'd need to be selective, and ask them to share the right thing in the right way, rather than the unreasonable expectation they will share everything . But if they would do it then instantaneously you have a much, much bigger audience reading that tweet or that FB link or clicking like because some people have millions of followers. The audience you are reaching may not be as specific as if people search by hash tag, or a scientific audience, but for things like the chilli challenge, getting support behind a petition, my question would be, does that always matter?

There are loads of youtubers for example, with young, active audiences in social media who did the ice bucket challenge. If they were tweeted/ contacted by Facebook and asked to do the chilli challenge wouldn't some of them do it simply because it's immediately a funny video for a good cause and they get to challenge friends? And wouldn't that mean they were more likely to start the chain reaction of people copying, sharing and passing it on? That's why the IBC spread IMO, not because people suddenly became massively interested in ALS, but because the challenge caught people's imagination as something amusing to do and for a good cause. I'm not dismissing that people ought to be interested in ALS btw, I'm simply being realistic about why the IBC spread.

So, not intending at all any offence to those working hard at advocacy by social media, especially if it's something that's been tried already this way round, but wouldn't it make sense to try an appeal to popular personalities like this to spread the word rather than just trying to do it ourselves and hoping they then get interested? I use ourselves lightly there as I'm aware it's not my energy being spent on this type of effort, and I don't for one minute take other people's for granted!

Forgive me if this is clumsily worded or irrelevant to the discussion, or if it's been tried before. But approaching people to share on our behalf is something I've through of for a while but not know how to try due to my own limitations or what others would think. It maybe entirely irrelevant for various reasons.

 

[Bob]

@Debbie23, thanks for your comments. Yes, it's an interesting idea to ask famous people to do some promoting for us. The only problem I can see is that they probably get loads of requests so we might have trouble cutting through the noise that they are subject to. But still a good idea. I've seen other people having success with this for non-ME/CFS issues. And very occasionally with ME/CFS issues. Stephen Fry has tweeted about ME awareness day.

 

[Debbie23]

Yes, that's a very good point, Bob about things getting lost amidst all other requests. That's why I thought it might be interesting to try it with the chilli challenge first specifically aimed at the YouTube crowd, and see if people pick it up? Vloggers for example, are always looking for points of interest for their videos, and I can see it being something they do simply because it could be funny for their content and easy to do; you potentially only need one person to pick it up and it could be the spark needed to start the chain reaction. But it's just one idea among many being offered and you make a very good point.

 

[Keela Too]

Well said @batteredoldbook

I started on Twitter when asked somewhere (might have been Facebook) to RT some tweets that were going out. At the time it was a bit pointless as I had no followers. However I started following others and gradually a following resulted.

I tweet mostly ME stuff, but also photography - especially if it is about Ireland . This actually means I have followers that are outside of ME circles. So I think it is useful to tweet beyond only one circle. I also find myself drawn to read things that would be outside of my normal interest - just because it pops up on my twitter feed.

If I want to follow just ME stuff, I go to one of the tags. #MEcfs #MyalgicE #SevereME or whatever - today I watched #CFSAC for a while. #pwME is also a growing tag to use.

I try to RT when I can, and sometimes take stuff from Twitter to share on FB & visa versa.

Some days I'm not on much, other days more. I chat a little on Twitter, but it can be confusing if more than 2 people get into a conversation... so FB is better for that IMO.

 

[Bob]

Yes, that's a very good point, Bob about things getting lost amidst all other requests. That's why I thought it might be interesting to try it with the chilli challenge first specifically aimed at the YouTube crowd, and see if people pick it up? Vloggers for example, are always looking for points of interest for their videos, and I can see it being something they do simply because it could be funny for their content and easy to do; you potentially only need one person to pick it up and it could be the spark needed to start the chain reaction.

I think that's a great idea. I think the chilli challenge girls have done quite a bit of that, but we could always do more. Like you say, we just have to hit the right person once for it to go viral. I can think of a group of popular young YouTubers who would love to film a chilli challenge. Like you say, they're always looking for new situations to film. We just need to write something catchy for them to notice and send it to a few people.

 

[batteredoldbook]

@batteredoldbook, thanks so much for taking the time to respond so thoroughly. Your comments are really interesting and useful.

No problem. Thanks for posing such an interesting question. I am sorry I can't see any substitute for hard graft but, if it is any consolation, I am certain we will have our day in the sun - and it will be crazy. Twitter will light up and we will all need to run to keep up.

Phoenix Rising is a huge resource for M.E folk and I have been directed here many times. Unfortunately I am mentally unable to process the volume of text herein otherwise I would have contributed & read more.

 

[batteredoldbook]

This actually means I have followers that are outside of ME circles. So I think it is useful to tweet beyond only one circle.

I think this is a very good idea.

 

[Sean]

Small groups within the community can be very powerful.

Don't know who originally said it:

Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.

 

[Eliza]

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?

I started a list too. Hashtags and accounts. I find that important hashtags are often missing so i do a lot of citating a tweet to ADD hashtags myself.

I try to reach gp's, md's, Govt, researchers, depending on the tweet subject.

We should get a good list for e e everyone to use.

The idea of 1 account w important tweets is a good idea.

 

[Bob]

I'm not sure if I explained this fully earlier, or not, so I'll mention it now...
For anyone who has a Twitter account with a large number of contacts on it, and if you find that you miss important tweets because you can't read everything...
You can create a private list e.g. just for ME related news.
Lists work in the same way as following people, so you add can add anyone to the list, but if it's a 'private' list then no one knows about it, so you can add a small group of accounts to it without upsetting anyone because they're not included.
You can add people to lists whether you follow them or not - so they are independent of the people you follow.
Once created, you can use a list in exactly the same way as your main Twitter stream; instead of your main Twitter stream, as an alternative or additional Twitter stream to your main one.

 

[beaker]

Don't know who originally said it:

Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.

Margaret Mead

 

[taniaaust1]

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.

I've never used Twitter either (and I wont use facebook), if I improve one day, I may use twitter then.

The only time so far in which I wanted to use twitter (but wasn't up to doing accounts to join) was when there was a ME/CFS conference going on and people were tweeting things from that. If I'd joined up then I would of just read the tweets from that and not later on read any other tweets or joined up elsewhere to receive tweets from other places.

So that may be what is going on with the ME/CFS community, people may not be reading the tweets they get so hence no thank yous etc being sent.

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!

I have right now got conversation messages or private messages as known elsewhere sitting in my phoenix rising inbox which I haven't read yet from 3 mths ago (I will read them at some stage)... so I certainly not going to keep up with twitter and be responding back to things if I was on that. The tweets would go unread by me. So maybe that is what is going on.

 

[Bob]

The only time so far in which I wanted to use twitter (but wasn't up to doing accounts to join) was when there was a ME/CFS conference going on and people were tweeting things from that.

Hi Tania, just to let you know, you don't need a Twitter account to read tweets, or to do searches on Twitter etc. If you go to the Twitter home page then it asks you to log in or start an account, but you can bypass that page by using another link, e.g. the Phoenix Rising profile: https://twitter.com/aboutmecfs or the popular #mecfs hashtag: https://twitter.com/hashtag/mecfs

 

[dancingstarheart]

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.

Hi, just as some more info. I have had people follow me, just because I retweeted their tweet. Or I have had followers of the person I retweeted, like that I retweeted and started following me.

Also, whenever a tweet has a hashtag in it, there is a whole different group of people the watch that hashtag that are not followers. If they like what you are retweeting, then sometimes they start following you.

So those are other ways this can grow.

Basic users will grow into more advanced users when they notice the phenomenon happening.

 

[dancingstarheart]

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.

To help with the crazy newsfeeds.... you can create lists and add not only people you follow but those you don't follow to the list... then whenever you want to see latest news, you just view the your list's feed. So you can have a knitting list of all tweeters and sites featuring that topic, and another list might be science, and another ME.

But I do agree that I am not a consistent social media attendee due to my disease. Can keep up with very few venues.

But twitter is best for advocacy, and reaching out to the public. versus FB which is more private amongst friends and also Phx Rsing.. which only reaches the patients.

 

[dancingstarheart]

I'm not sure if I explained this fully earlier, or not, so I'll mention it now...
For anyone who has a Twitter account with a large number of contacts on it, and if you find that you miss important tweets because you can't read everything...
You can create a private list e.g. just for ME related news.
Lists work in the same way as following people, so you add can add anyone to the list, but if it's a 'private' list then no one knows about it, so you can add a small group of accounts to it without upsetting anyone because they're not included.
You can add people to lists whether you follow them or not - so they are independent of the people you follow.
Once created, you can use a list in exactly the same way as your main Twitter stream; instead of your main Twitter stream, as an alternative or additional Twitter stream to your main one.

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.

 

[Tom Kindlon]

Making my way through this thread.
I would encourage people writing on this thread to mention your Twitter username when posting (only if you feel comfortable doing it of course). (I imagine a lot of people would like to do this anyway).

Different people tweet different things and it's nice to know a little about people's philosophy/approach to tweeting.

@batteredoldbook kindly mentioned me, @tomkindlon.