How to use twitter for advocacy

[Kati]

James Coyne made a great comment on twitter today, with a link to a guide to twitter.

'@CoyneoftheRealm: #MECFS community needs wider and better @twitter involvement @Gozde786 shows how. https://t.co/tI9qwobLCw'

These 2people are good ones to follow by the way. Get to twitter! let's make noise together.

http://linkis.com/blogs.plos.org/mindt/sF2lE

 

[beaker]

General Technical question :
Having trouble when I click on someone's icon to visit their home page or on an article or an expanded conversation that takes me off the page I am on. When I go back, it takes me to the top, and I lose my place and it is very tedious and energy drain to scroll and find my spot.
There has to be a way to return to where I was. Probably something simple that I am missing way too easily.
Can you -- or anyone else that twitters help?
Thanks.

 

[Kati]

General Technical question :
Having trouble when I click on someone's icon to visit their home page or on an article or an expanded conversation that takes me off the page I am on. When I go back, it takes me to the top, and I lose my place and it is very tedious and energy drain to scroll and find my spot.
There has to be a way to return to where I was. Probably something simple that I am missing way too easily.
Can you -- or anyone else that twitters help?
Thanks.

Hi @beaker my best guess is that the program you are using is not friendly of use. My browser version on ipad is not as good as the app. i am not sure if you are using apple or microsoft based browser, but check out different apps, to see if one is not better.

 

[beaker]

Hi @beaker my best guess is that the program you are using is not friendly of use. My browser version on ipad is not as good as the app. i am not sure if you are using apple or microsoft based browser, but check out different apps, to see if one is not better.

Using a macbook w/ safari. should be pretty standard w/ that. #frustrated << starting to write in twitter speak lol

ETA : some of it works better on my iPhone but its' a pain to type on. so I use my mac.
Maybe it's that my mac is old.... I really don't like the new ones and hate to give this up. It's having other issues too. Maybe thats it. Will ask around.
Thanks for the idea.

 

[Kati]

Using a macbook w/ safari. should be pretty standard w/ that. #frustrated << starting to write in twitter speak lol

There is a twitter app, do you have it? Personally i prefer the app optimized for ipad rather than the desktop.

well done @#frustrated

 

[Bob]

General Technical question :
Having trouble when I click on someone's icon to visit their home page or on an article or an expanded conversation that takes me off the page I am on. When I go back, it takes me to the top, and I lose my place and it is very tedious and energy drain to scroll and find my spot.
There has to be a way to return to where I was. Probably something simple that I am missing way too easily.
Can you -- or anyone else that twitters help?
Thanks.

If you right-click on a link and open the content in a new tab, then your current tab stays where it is and you can read the new tab at your leisure. That works with all internet content, not just Twitter.

 

[beaker]

If you right-click on a link and open the content in a new tab, then your current tab stays where it is and you can read the new tab at your leisure. That works with all internet content, not just Twitter.

It works w/ some things and not others. Mac no Rt click, but there is a sort of the same thing.
Will mess around with it and see what happens.
#Thanks !

 

[radicchio4497]

"MECFS community needs wider and better twitter involvement": is this a slur on patients because there are people who tweet 50+ times a day and they are my heroes.
we're doing a great job on the twitter.

 

[Scarecrow]

"MECFS community needs wider and better twitter involvement": is this a slur on patients because there are people who tweet 50+ times a day and they are my heroes.
we're doing a great job on the twitter.

It isn't a slur on patients.

Coyne made the comment after he had given a talk on the previous day, and nobody had tweeted any updates.

He underestimates how difficult it can be for someone with ME to listen, follow what's going and compose a pithy, informative tweet on a mobile phone when you're not proficient.............but there was certainly no malice intended.

 

[Bob]

"MECFS community needs wider and better twitter involvement": is this a slur on patients because there are people who tweet 50+ times a day and they are my heroes.
we're doing a great job on the twitter.

It was friendly encouragement to get even more organised than we are.
I agree that our community, as a whole, could have a much bigger impact on social media:
http://forums.phoenixrising.me/index.php?threads/social-media-community-advocacy-fail-why.39272/

 

[Valentijn]

"MECFS community needs wider and better twitter involvement": is this a slur on patients because there are people who tweet 50+ times a day and they are my heroes.
we're doing a great job on the twitter.

A few very active people isn't the same as having a small army to like and retweet. Even on a bad day most patients would be able to scroll through a list of the tweets of the people they follow and like or retweet the useful ones.

 

[Bob]

A few very active people isn't the same as having a small army to like and retweet. Even on a bad day most patients would be able to scroll through a list of the tweets of the people they follow and like or retweet the useful ones.

Yep, good tweets, e.g. from friendly journalists, are still only receiving a small number of 'likes' rather than hundreds or thousands. We need an army on Twitter and Facebook liking good posts.

 

[radicchio4497]

A few very active people isn't the same as having a small army to like and retweet.

we gotta a bunch of very nonactive ppl too, and they do RT. I'm one of them: my acct is naught but an RT machine for those who are actually nonlazy enough to go and dig up the news.
would also like to point out the delicious irony of patients being too ill to go on social media to advocate for an effective treatment (or in this case the right to not be mistreated) which would enable them to advocate for themselves if they were treated. get your tongue around that!

 

[BurnA]

Yep, good tweets, e.g. from friendly journalists, are still only receiving a small number of 'likes' rather than hundreds or thousands. We need an army on Twitter and Facebook liking good posts.

Can I ask anyone who isn't on twitter to sign up and start using it now ?

Can I ask anyone who still isn't on Twitter - why aren't you ?

Seriously - please explain why you are not on Twitter.

 

[Bob]

Can I ask anyone who isn't on twitter to sign up and start using it now ?

Can I ask anyone who still isn't on Twitter - why aren't you ?

Seriously - please explain why you are not on Twitter.

Social media doesn't suit everyone. I hate using Facebook, and using it makes me miserable, so I refuse to use it except for very occasional events. Facebook actually has a wider reach than Twitter, so I often think that I should use it more, but making myself miserable would not be productive.

And, some people aren't well enough to use more than this forum.

I think that badgering people isn't the right way to encourage people to try a new online venture. Instead, to encourage people to use Twitter, I think we should say how much fun it is and how easy it is. It's exceptionally easy to start a Twitter account (which can be anonymous). And it takes a moment to like a tweet. And then you'll be hooked. I use Twitter because I enjoy it and it enriches my life. But it won't suit everyone.

I know that quite a number of members of this forum have started using Twitter since the long Twitter thread was started, and we've started copying tweets to the forum more regularly, which I think enriches the forum.

We already have a large community of many thousands of ME patients and carers using Twitter. Perhaps we need to find a way to better harness their combined power. Or perhaps it will grow organically.

 

[PandaDarling]

I'm using twitter to talk about CFS and mental health. If you'd like to follow me I'm @panda_darling

 

[BurnA]

Social media doesn't suit everyone. I hate using Facebook, and using it makes me miserable, so I refuse to use it except for very occasional events. Facebook actually has a wider reach than Twitter, so I often think that I should use it more, but making myself miserable would not be productive.

And, some people aren't well enough to use more than this forum.

I think that badgering people isn't the right way to encourage people to try a new online venture. Instead, to encourage people to use Twitter, I think we should say how much fun it is and how easy it is. It's exceptionally easy to start a Twitter account (which can be anonymous). And it takes a moment to like a tweet. And then you'll be hooked. I use Twitter because I enjoy it and it enriches my life. But it won't suit everyone.

I know that quite a number of members of this forum have started using Twitter since the long Twitter thread was started, and we've started copying tweets to the forum more regularly, which I think enriches the forum.

We already have a large community of many thousands of ME patients and carers using Twitter. Perhaps we need to find a way to better harness their combined power. Or perhaps it will grow organically.

I agree about Facebook. I dislike seeing all my friends doing things that i would be doing if I wasn't ill. Facebook may have a wider reach alright but Twitter is good for following topical items and people who you dont know personally.

Maybe I was a bit blunt but I was genuinely interested to know why people aren't on Twitter. Maybe if we can convince them ( as you tried to do ) that it can be enjoyable it might encourage more to sign up. But without knowing why they aren't on it we can't alleviate their concerns.

 

[Kati]

Twitter right now is a tool for social movement, when we can not walk the streets and protest. This is how we can be powerful.

 

[Cheshire]

Just made this strip (for twitter use?)
What do you think? Is it worth it?
Could you check for any grammar/spelling/vocabulary error?

 

[BurnA]

@Cheshire I like it but before you go to print I have a comment :
Is the sf36 scale on the x or y axis ? The label appears like it's the y axis but the color scheme looks like the x axis so I was a bit confused. I assume its the x axis but in the first dwg the 80 of recovery is above the 65 also hinting that it might be the y axis.

Maybe make it clearer that the pink zone is me/cfs and the green is recovery ?

I hope you don't mind these comments, indeed others may not agree so feel free to ignore.