Social Media - Community advocacy fail. Why?

[radicchio4497]

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..

yeah I have noticed myself violating this etiquette once or twice if unknowingly.

a few friends of mine have been wondering what would be the necessary leverage to get NIH to make more announcements like the one we heard earlier this month. is it a matter of getting enough of the right studies thru? positive news stories? it's not really clear what's driving the positive momentum but clearly journalists, government are latching onto it. I read somewhereabouts that vashtag had connections and was able to pull some strings but that can't be the whole picture.

am perturbed by this -- I imagine -- not entirely false impression that, judging from the past 30 years of neglect, it doesn't matter what the large majority of patients think as no one is listening in the first place. the politics of this illness is v, v strange to me. perhaps the art of propaganda is more subtle than I know, but it seems that the underlying problem is not that people/institutions are maliciously spreading misinformation but rather that they're disinterested in really digging deeper... the economics alone of having so many people on total disability for so long should have been a call to action long ago, I suppose #PACE was borne of this...

 

[Jenny TipsforME]

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

This is interesting because I often want to cut names out but worry people will feel offended for being left out! The etiquette can be quite complex on social media, especially as we haven't grown up learning the rules.

I've forgotten whatever I've said previously on this thread BTW.

Depending on the relevance of the tweet, I wonder if a good hashtag combo is
1) # like #pwme which our community will look for
2) # which is trending or has wider appeal (+v relevant to your tweet) eg #haiku #dogsoftwitter #thankful #nutrition #health
3) # that's very niche to the tweet eg #PACEgate #spooniepoem

Eg "this is my #haiku #spooniepoem about #chronicpain [insert micropoem] #MEcfs"

Are there general science or new research # we could use?

 

[radicchio4497]

Depending on the relevance of the tweet, I wonder if a good hashtag combo is
1) # like #pwme which our community will look for
2) # which is trending or has wider appeal (+v relevant to your tweet) eg #haiku #dogsoftwitter #thankful #nutrition #health
3) # that's very niche to the tweet eg #PACEgate #spooniepoem

been seeing some good examples of this recently, the key is to couch the hashtags in a message outsiders might understand.

 

[Jenny TipsforME]

been seeing some good examples of this recently, the key is to couch the hashtags in a message outsiders might understand.

Yes and also that they will be interested in. TV programmes are good for this if there's a genuine reason it relates to ME experience. One I saw yesterday was why pwme would struggle to get to see Star Wars in the cinema despite really wanting too (@Tom Kindlon I think). I thought this was excellent because
1. Very topical and trending this week
2. Able to highlight invisible symptoms eg light and noise intolerance
3, Empathy inducing as lots of people are crazy about Star Wars and would find it traumatic to have to miss out (for most of us in reality it is the least of our worries but grabbing the connection is useful).

I'm sure everyone reading this thread is wiser than this, but there is a temptation to feel like sending a tweet is communicating with the world. People are unlikely to ever see your tweet unless they already follow you, or you use a hashtag they've searched for. Non followers won't see ME hashtag only tweets unless they actively look them up, in which case they already have awareness of ME!

 

[Jenny TipsforME]

I just tested out this tweet on the back of my last post
"#author Laura Hillenbrand on living with #MyalgicEncephalomyelitis.
#booksintofilm #UNBROKEN #screenwriting #pwme https://t.co/8i0nUJYXGQ" (contains retweet of Hillenbrand ME quote in picture form)
It wasn't successful in terms of quantity but immediate Likes included a screenwriter/director and an actor and a photographer. These people DON'T already follow me and their professions are a good target for increasing ME awareness more widely. Do you have any similar ideas for tweet themes?

 

[Tom Kindlon]

Yes and also that they will be interested in. TV programmes are good for this if there's a genuine reason it relates to ME experience. One I saw yesterday was why pwme would struggle to get to see Star Wars in the cinema despite really wanting too (@Tom Kindlon I think). I thought this was excellent because
1. Very topical and trending this week
2. Able to highlight invisible symptoms eg light and noise intolerance
3, Empathy inducing as lots of people are crazy about Star Wars and would find it traumatic to have to miss out (for most of us in reality it is the least of our worries but grabbing the connection is useful).

I'm sure everyone reading this thread is wiser than this, but there is a temptation to feel like sending a tweet is communicating with the world. People are unlikely to ever see your tweet unless they already follow you, or you use a hashtag they've searched for. Non followers won't see ME hashtag only tweets unless they actively look them up, in which case they already have awareness of ME!

Thanks
This was original one:

https://twitter.com/i/web/status/677310668886827008

Other people replied on Facebook so I did some more though these didn't mention the yearning to watch Star Wars:

https://twitter.com/i/web/status/677336534912077824

https://twitter.com/i/web/status/677529153093042177

https://twitter.com/i/web/status/677556023981314048

And this one didn't have the Star Wars hashtag so not an example of what you were talking of

https://twitter.com/i/web/status/677604130114789376

 

[Jenny TipsforME]

With @SKWixey I've started an impromptu campaign which I've tagged #MEawarenessChallenge for twitter.

The rules are:

Twitter #MEawarenessChallenge
1 Start a tweet with # and pause to see trending # (or look up)
2 Choose a trending hashtag
3 Write RELEVANT tweet RE #MEcfs including a ME # that is understandable to outsiders (IMO #Mecfs #MyalgicE #MEawareness are good for this but not #pwme or #spoonie for this purpose)

The idea is that we connect up pwme concerns with the more general concerns of Twitter. Examples so far:

Take a look at @leedsMEnetwork's Tweet:

https://twitter.com/i/web/status/677899592256651264

Take a look at @TweetTipsforME's Tweet:

https://twitter.com/i/web/status/677926577385160704

Take a look at @TweetTipsforME's Tweet:

https://twitter.com/i/web/status/677922879657373696

The key to making it work is tweets that are genuinely relevant to the trending hashtag AND ME. Also the trending hashtags will change all the time so shouldn't become spammy or nagging.

Please join in and spread the word! If it takes off there may be some sort of virtual trophy for the most skillfully executed #MEawarenessChallenge tweet.

@Tom Kindlon @Keela Too @batteredoldbook @Bob @radicchio4497

 

[Keela Too]

It's a good idea. I've found that if I include a link to my blog, I can see what hits I get on my blog as a result. My observations:
.

• Using casual tags (eg #happy) that anyone might use, rarely results in a hit on the blog as people just use the tag but don't actually follow it.
• I have spotted tags that are being followed at a particular time eg #physiochat and have had a couple of interactions and blogpost hits by joining in briefly with the conversation. However I think using this sort of tag needs to be done cautiously and with respect for the other people using the tag.
• The best tags to follow/join may not be the most busy ones - because there your post falls down stream very quickly. One busy chat I joined was mad... like a meeting where everyone just shouted all at once into a big empty space. I could see very little interaction.

Could a shorter tag be found for this? #MEawarenessChallenge is hugely long.

PS #MEawarenessHour (when I remember to join in) usually shows a considerable interaction with my blog posts. I try to also link to other interesting material during that time rather than just my own blog. It's UK time 8-9pm on Wednesdays.

 

[ScottTriGuy]

The key to making it work is tweets that are genuinely relevant to the trending hashtag AND ME

I concur - last week our Min of Health tweeted a pic of her donating blood - I replied and affirmed her effort and asked if #mecfs folks could donate blood too - then added that most of us were too sick to do it anyway.

 

[worldbackwards]

With @SKWixey I've started an impromptu campaign which I've tagged #MEawarenessChallenge for twitter.

This one made me laugh:

https://twitter.com/i/web/status/677868471695241216

 

[Sasha]

This one made me laugh:

https://twitter.com/i/web/status/677868471695241216

Brilliant - think someone should retweet that to James Coyne.

 

[Jenny TipsforME]

@Keela Too yes just to clarify I'm not expecting #MEawarenessChallenge to fit into many of the actual tweets - mainly for passing on the instructions.

Can anyone think of a really short specific # just to keep track between ourselves? Could be #MEAC but better if it makes sense. I'm too off colour today to generate any good ideas. Any tweets that suggest otherwise were pre-buffered!

 

[Keela Too]

Ah okay.. that makes more sense. It is a good idea certainly because of the potential to make contact outside of our normal circles with Twitter.

Would #MEshare or something short like that be good?

 

[Jenny TipsforME]

Yes that could work. Can't see how it can be shorter than that and make sense.

Something just popped into my mind #RT4ME - not specific to this challenge but perhaps if a tweet raises ME awareness in a subtle way (not including the more obvious and long #MEawareness or #MEawarenessChallenge) it could be added to give other people a nudge to retweet. I don't know though feeling quite feverish so not trusting my judgement, could be annoying and we seem to need to manage public perception of our online behaviour. In limbo of too ill to get up but too well to tolerate just resting so having slightly random thoughts.

 

[Keela Too]

I like #RT4ME .... good thinking.

 

[BurnA]

Coyne is currently putting the heat on Ben Goldacre on Twitter. Suggest liking and retweeting as many tweets as you can to keep the pressure up on Ben who is claiming he is just to busy to look at PACE.

 

[Keela Too]

Not sure that pestering someone on Twitter is the right response.

 

[BurnA]

Not sure that pestering someone on Twitter is the right response.

Why do you feel it's pestering ?

 

[Keela Too]

It just seems that way if multiple people are asked to react to his posts, or posts he is tagged in.

It's sad of course that Ben Goldacre hasn't taken a more positive line on the PACE trial, but pushing him into a corner on why he isn't doing more for the situation, is unlikely to encourage him to do so IMO.

 

[Valentijn]

It just seems that way if multiple people are asked to react to his posts, or posts he is tagged in.

Retweeting doesn't really increase the amount of content directed at someone. It just disseminates it to a wider audience and shows support for it.

I agree that high volume campaigns can be counter-productive, but liking and retweeting without an additional comment certainly is not. If you're going to object to such tactics, you'd might as well tell everyone to stop advocating entirely