Social Media - Community advocacy fail. Why?

[snowathlete]

As @Keela Too says, it is a very wise strategy to do whatever you can to expand your followers beyond the ME/CFS community. It can take some effort (less if it is a hobby you already have or specialism you already know about or whatever) but is well worth it.

If you spend all your time focused on ME/CFS then that effort may not actually get much reach. But if you spend even a small portion of that time on building relationships outside of ME/CFS then some of those followers may actually pay some attention to your ME/CFS information too and that takes you out of the ME/CFS world which in my view is essential to us increasing awareness. If only one modest follower of yours who has nothing to do with ME/CFS retweets your ME/CFS tweet to their followers then likely all of their followers have never heard the information before. Obviously, you have to be very aware of not scaring off followers from either group by tweeting too much on one or the other subject, but although I may lose a few followers due to this, I think the benefits outweigh the loss.
I am very focused on this strategy right now - trying to reach a large audience outside of the ME/CFS community - working away slowly on a big project.

I think this is a great thread. Social media is such an under-utilised opportunity at the momment. Lots of scope to really achieve things in these areas.

 

[Bob]

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.

Thanku for your comments, Keela. Actually, I agree with you, in general. The title of the thread and my opening post were designed to be slightly provocative. And I was having a bit of a rant about a narrow issue.

I agree that I have given a one-sided view of social media. I think that readers unfamiliar with social media will have got the wrong impression from my opening post, which is regrettable, but I've attempted to correct that impression in later posts. I had assumed that forum members were more familiar with social media than they are, so I didn't think it mattered about me focusing on a narrow point that was unrepresentative. If I ever get around to writing an article about social media it will be positive and representative.

So I agree that we're not failing in social media, in general. But there are examples of where we could do much better. For example, the journalists' tweets have still only been favourited roughly 30 to 70 times, and it would have been nice to see those acknowledged a thousand times, or even many thousands of times. Considering the number of patients with ME around the world (millions), i still think we've failed to acknowledge important Twitter activity with just 50ish retweets.

So I think it's interesting to explore where we could be stronger on social media. In any case, I've found this thread helpful and interesting and I hope others have to. I've learned from our discussions. But I accept your point, Keela, that were doing a good job on social media in general. We certainly have a vibrant community using social media.

 

[Keela Too]

I think we agree @Bob .... Your points are valid and well made. I just had to say my piece in reaction to the title - and to keep the discussion going.

On the matter of the tags used. #MEcfs still seems to be the biggest one, and although I still use it, I'd love to see a general trend towards a new one. I like #MyalgicE but it doesn't seem to have caught on.

#MEawareness is good, and #MEawarenessHour has produced a flurry of activity each Wednesday night. And there are folk reading it too, because when I share links to my blog (where I can see where visits originate) there is a decided upturn in people reading those links. EVEN when I share links that most posting on #MEcfs will have seen.

So that suggests to me that there are some new people being attracted to #MEawarenessHour which is great. Also folk can still click on that tag anytime in the week, to see what was shared during the most recent hour... I know it's a long tag, but at least it's not going to attract other stuff the way #ME or even #SeeME would.

 

[Tom Kindlon]

I think using #MEawarenesshour particularly at the start of a tweet gives people a way to talk about ME without having to worry to much about annoying other followers. If most followers now it's only going to be for an hour, they'll probably put up with some tweets and even RTs.

Overall, I imagine I send out too many tweets for most who don't have an interest in ME/CFS (though I know I have some followers of people with other chronic illnesses from the general chronic illness/spoonie/invisible illness pins I send out). I think I'll stick to what I'm doing but it's great if people can reach a wider audience (I would hope some of the tweets I send out, from some people retweeting them, do sometimes reach a wider audience).

 

[Keela Too]

@Tom Kindlon Keep doing what you do please! You are wonderful at finding interesting content, and I often RT you, or share onwards links you've found.

I think there are a circle of ME peeps tweeting & RT-ing each others stuff.

Sometimes it might feel like we are just endlessly circling tweets amongst ourselves like we are stuck on some giant round-a-bout, but I also think if we keep doing this, and keep up this momentum, that like a big Catherine Wheel, we also fire out stuff to the wider world and so gradually our message gets out.

Sure we will never convert everyone, nor even make contact with as many as we would like... but sometimes it just takes one or two key people, to see a pertinent message at a critical moment, and that somehow that helps put one more little piece of a jigsaw in place, and that in some way helps to move everything forwards.

Often we won't ever know what has made the difference, but I continue with what I do, because who knows, maybe some little thing I've written, or tweeted, or re-tweeted will just hit home and be the catalyst for change.

 

[ahimsa]

I think there are a circle of ME peeps tweeting & RT-ing each others stuff.

It definitely feels that way. I like the idea of trying to get intersecting circles or groups somehow so that it spreads information to people other than patients.

But on the other hand sometimes just having a circle of ME folks tweeting at each other does provide some validation and support. So it's not a waste of time.

I am still pretty new to all of this and not sure what is effective and what's not. But when I was tweeting anything about NIH I tried to add #NIH to the tweet. Then people searching for the NIH hashtag, probably looking for something else, would see the tweets, photos & graphs about ME/CFS funding being so low.

I have no idea of that would actually raise awareness but I figured it could not hurt.

I have enjoyed reading this thread. I am very inconsistent in my twitter reading and re-tweeting but I do what little I can.

 

[Tom Kindlon]

Thought I'd post this somewhere and this seemed as good a place as any:

I've just learned about this new feature: you can turn off the retweets of individuals you follow:

http://ccm.net/faq/40260-twitter-how-to-turn-off-retweets-from-a-user

I might be able to follow more people with careful management now (a few of the people I currently follow generally RT a lot of non-ME stuff I'm not so interested in so if I do this for them I could follow more and make the Twitter experience a bit less frustrating overall).

 

[ahimsa]

I've just learned about this new feature: you can turn off the retweets of individuals you follow:

http://ccm.net/faq/40260-twitter-how-to-turn-off-retweets-from-a-user

Yes, turning off re-tweets is very helpful! It cuts down traffic quite a bit.

I use this feature on many people that I follow. But thanks for mentioning it for those twitter users who have not found this option.

 

[Keela Too]

Thank you - I didn't know that!

 

[radicchio4497]

haven't read thru this entire thread, but what do we think of explicitly mentioning people in replies in order to bring attention to a tweet which we deem impt or worthy of promotion.
- is this spam
- is this useful
discuss

 

[Bob]

haven't read thru this entire thread, but what do we think of explicitly mentioning people in replies in order to bring attention to a tweet which we deem impt or worthy of promotion.
- is this spam
- is this useful
discuss

It's a good question. It depends on the context and recipient. e.g. is the recipient a private individual or a govt agency. I think we have to be careful not to spam people. And if people have asked not to be tweeted then obviously that needs to be respected. But it's OK to bring things to people's attention occasionally.

 

[Tom Kindlon]

haven't read thru this entire thread, but what do we think of explicitly mentioning people in replies in order to bring attention to a tweet which we deem impt or worthy of promotion.
- is this spam
- is this useful
discuss

Can be useful. I get quite a few messages like this (10-15 per week?? Possibly more). I like to read things before highlighting them so may not do anything immediately but later will often re-tweet the message or sometimes do my own message if I want a different wording (or sometimes both).

May depend on individual who is being included. I don't do it too much myself but I have a decent following already.

 

[Keela Too]

In relation to this I think replys to conversations where multiple people are tagged need to be treated carefully too.

If a reply might be useful to more than one individual, perhaps leave their name in your reply once, but if the conversation with a different individual goes further than a couple of tweets,then I think it is polite to remove the tags to the others.

I recently was left tagged in a conversation that developed around something I didn't feel like discussing, but others were doing so and suddenly I had a string of "mentions" building up with comments that appeared directed at me, but which were in fact were directed at a different tagged individual.

I think the way Twitter puts all these names in a reply by default is frustrating.

 

[radicchio4497]

I think the way Twitter puts all these names in a reply by default is frustrating.

a problem easily solved simply by paying more attention (ok maybe not so easy for pwme).

am not terribly good at formulating my own posts but will RT on command. half the battle seems to be creating posts worthy of such an honor. @TomKindlon seems to be pretty good at this so is @batteredoldbook.

often curious who our audience can possibly be as I know For Me Personally faves and RTs come primarily, by which I mean "solely" from other MyE activists.

 

[radicchio4497]

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.

have been trying to convince people to piggyback trending hashtags as I think this moves us out of our echochamber a bit. clearly I am not v persuasive.

 

[Kati]

have been trying to convince people to piggyback trending hashtags as I think this moves us out of our echochamber a bit. clearly I am not v persuasive.

Yes, stepping outside our community. Reaching to larger audience. Engaging with professionals outside the field.

I cannot over-emphacize the importanpce of this.

 

[radicchio4497]

"engaging with professionals outside the field": seems to be a v onesided task from my experience, wanna give a neophyte a clue?

 

[Kati]

"engaging with professionals outside the field": seems to be a v onesided task from my experience, wanna give a neophyte a clue?

Well, @radicchio4497 there are weekly health care tweetchats happening on various topics. The ones i engage with, #hcsm (health care social media, Sundays 6PM PST) #bioethx (bioethics, Monday 5:30 PST) and #HCLDR
(heath care leaders tuesdays, 5:30 PST) assembles highly engaged health care professionals, but also patients. It is a great opportunity to make new friends, and discuss a topic according to your own perspective. There is also a chat for #meded (medical education) #spoonie and #rheum (rheumatology) which attracts patients and rheumatologists too.

Tweetchats are best used with website tchat.io. In order to 'be in the chat' you need to add hashtag to every tweets. The first few times it can be difficult to follow, and some chats are more fast paced than others, depending on the number of people it attracts. If you feel overwhelmed, simply worry about answering the questions relating to the topic discussed.

 

[radicchio4497]

yeah @Kati have noticed that you're WAY on top of this shit, congrats by the way
for me the trouble is keeping track of time and date, maybe there's some sort of alert system we could implement to get pwme on the same page? twitter mentions perhaps, wondering if the fb "event" system might not be inapropos here. do you find these chats useful? are you listened to? is this something, in your opinion, that pwme activist types should engage in more widely?

 

[Kati]

yeah @Kati have noticed that you're WAY on top of this shit, congrats by the way
for me the trouble is keeping track of time and date, maybe there's some sort of alert system we could implement to get pwme on the same page? twitter mentions perhaps, wondering if the fb "event" system might not be inapropos here. do you find these chats useful? are you listened to? is this something, in your opinion, that pwme activist types should engage in more widely?

Well I think the best practice would be to 'disperse and disseminate', meaning not to invade one single chat as a group. It is considered rude to take over the conversation especially if it's off-topic.

This is a slow approach. Get into a chat, attend weekly if possible, get to know the regular. Follow them on twitter. Hope to be followed back. Once in a while, mention this illness in the context of the conversation.

This is also valid for tweet chats or Facebook chats with your congressman, your member of parliament or whoever is representing you in politics. One politician has a weekly chat on FB and i have been able to mention the cause of ME several time. A month or 2 ago, there was a chat with a congresswoman from California who is known to take on the cause of underprivileged groups.

Here is a useful website to check out the chats- http://www.symplur.com/healthcare-hashtags/tweet-chats/ there are chats originating from Europe, America and Australia/NZ. Find one you're curious about and set up an alarm on your phone to remind yourself.

Edit to add: remember that what you post on twitter will be read off your stream. People in the chat will 'check you out'. Think about your profile as well.