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?