Bob
Senior Member
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- England (south coast)
That list of tweets by journalists is super handy. Thanks for taking the time to put that together, I am going to try and work my way through that list thanking them.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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That list of tweets by journalists is super handy. Thanks for taking the time to put that together, I am going to try and work my way through that list thanking them.
As I mentioned to Kati, you can use private Twitter lists to replace your main Twitter stream as your main stream, or in addition to your main Twitter stream - this avoids the need for a cull. Lists can be used so you won't miss the Tweets from the accounts that you'd like to follow closely. I find private lists very helpful - and they're worth playing around with if you use Twitter regularly.
Thanks Kati. Have you tried using private 'lists' on Twitter yet? You can create your own lists, and they work in the same way as your main Twitter stream, but you can choose who to place into the list. They can help if you follow a large number of people but you want to focus on a smaller number of Tweeters for regular updates or for specific issues. If it's a private list, no one knows if they've been placed in the list, or excluded, so it's a useful tool that you can use without upsetting any of your followers.
Thanks Kati.
What do you mean by "threads pinned with social media alerts"? Do you mean to set up a dedicated forum thread into which we can place important social media alerts for sharing? I think that could be a very good idea.
Actually, it does make sense because people like to see their tweets retweeted whoever is doing the retweeting. It's about numbers. The person who sent the original tweet will notice all the retweets and favourites. For example, each interaction is recorded and registered by the Twitter analytics facility, and the info is fed back to Twitter users. The tweets with the most interactions are highlighted. So all interactions count.
Justy, you could be describing me ! ;-) But I find twitter easier to follow than this forum most days.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.
Being a rural, housebound, middle aged mum who doesn't work or socialise means I would have zero followers and then wouldn't really know what to do from there -I imagine many of the surrent M.E followers are in the same boat. Mayev they signed up for something lieka conference, or to read M.,E updates from say Invest in me but don't really tweet themselves.
Its the same old problem when you are trying to get seriously ill people to do it all for themselves...
BTW I think your ideas Bob are all good - my remarks are not a criticism or negative, just my attempt to answer ypur question. sorry for typos - brain not firing today.
Thanks for pointing this out @Bob. I have been learning as I go. This could be very helpful for me.As I mentioned to Kati, you can use private Twitter lists to replace your main Twitter stream, or in addition to your main Twitter stream - this avoids the need for a cull. Lists can be used so you won't miss the Tweets from the accounts that you'd like to follow closely. I find private lists very helpful - and they're worth playing around with if you use Twitter regularly.
Usually I would simply favourite a tweet as an acknowledgement or thank-you. We don't want to spam our followers. But occasionally I'll retweet simply to acknowledge the importance of a tweet.I had never considered that RTs are thank yous though.
@adreno, as a long-term user of Twitter, i don't agree with your assessment of it.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.
That's an interesting idea.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.
Yes, high profile accounts have more impact than ordinary accounts, but Twitter is surprisingly egalitarian.
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.
Now, I know that the forum is also social media - but the forum has structure and I understand it.
Hi JPV, I think I have given the wrong overall impression in my opening post, because I was focusing on a narrow issue, and highlighting a few specific advocacy fails, and because I was having a bit of a rant, and so I think I failed to give a rounded picture. I had assumed that forum members would be more familiar with social media than most of us appear to be, so I didn't provide the full context.I don't know how other people feel but because of the stigma associated with this illness I don't want to be connected with it using my real identity anywhere online.
If others feel the same way, perhaps this why you don't see much advocacy on social networks.