Detailed instructions on how to sign up to Twitter can be found here:
Once you’ve signed up the first step is to begin to follow other members in which you have an interest. For example many celebrities Tweet including Stephen Fry http://twitter.com/stephenfry and Lance Armstrong http://twitter.com/lancearmstrong.
You can use the search engine to find people by their username, you can also do hashtag searches to find people who Tweet about the things that interest you. By doing searches for #mecfs, #fibro, #xmrv, #lyme, and #lupus, you will find people who are Tweeting about these subjects.
You will also find many sufferers of chronic illness by searching for #spoonie, this hashtag represents Spoon Theory (an analogy used to describe what it’s like to live with illness or disability as written by Christine Miserandino http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf )
and is used by sufferers of many diseases including ME/CFS, fibromyalgia, lupus and multiple chemical sensitivity.
More info on hashtags http://support.twitter.com/entries/49309
What is a Tweet?
A Tweet is simply a text-based post of up to 140 characters. Tweets are publicly visible by default but the sender can restrict message delivery to just their followers. If you do this however, your tweets will not count toward trending topics.
Details on how to add or change your profile picture and information can be found here: http://support.twitter.com/groups/31-twitter-basics/topics/107-my-profile-accountsettings/articles/127871-how-to-change-your-profile-picture-or-information
For further help with getting started on Twitter visit http://support.twitter.com/groups/31-twitterbasics
For a topic to trend on Twitter it has to be popular at that immediate moment, it does not help for a topic to be popular over a day or a week etc. The side bar on the right of every member’s homepage lists the current top ten trending topics and is a way for people to see what the majority of people are discussing. Twitter uses an algorithm to identify which topics are trending but also has measures in place to block topics from trending if they do not appear to be naturally occurring and genuine in nature. Things that are frowned upon and can lead to topics being blocked from the trending list include “Repeatedly Tweeting the same topic/hashtag without adding value to the conversation in an attempt to get the topic trending/trending higher.”
In the trending topics section of the Twitter support site it also states that “The most important thing is to make sure your Tweets are genuine thoughts or impressions and not attempts to insert yourself into a trend. Everyone who clicks on the trending topics should be able to see real people’s ideas and links to further relevant information.” http://support.twitter.com/entries/101125-about-trendingtopics
So when we have an issue we want to raise awareness of through Twitter, it is not enough for us all to Tweet the same message at the same time. We need to create a dialogue. An example of this would be for people to share their experiences of living with neuroimmune disease with each other and to ask each other questions.
Replying to a Tweet
You can reply to a Tweet by hovering your cursor over it and clicking on the reply button that appears. When you click reply you’ll notice that the username of the person you’re replying to will appear in the text of your Tweet preceded by an @ sign. You can address a Tweet to anyone using this method, you simply add @ and their username (without any spaces in between) to the beginning of your Tweet. They will then be notified that they’ve been mentioned in a Tweet and the Tweet will appear in their Mentions list.
Adding links to Tweets
Although Tweets are only 140 characters long you can still include links, even to websites with long addresses, by using link shortening services. Many link shortening services are available, among the most popular ones are bit.ly http://bit.ly , TINY http://tiny.cc/ and TinyURL http://tinyurl.com
Using these sites is easy, you simply copy and paste the link address you want shortening into the form provided and press enter to create you’re shortened link. You can then cut or copy your new shortened link and paste it into your Tweet.
For example the following link to Newswise article Spinal Fluid Proteins Distinguish Lyme Disease from Chronic Fatigue Syndrome
was shortened via bit.ly to http://bit.ly/h68JvR
It can now be added to the following Tweet:
Spinal Fluid Analysis Distinguishes #Lyme from Chronic Fatigue Syndrome & Both from Controls http://bit.ly/h68JvR #mecfs #xmrv
It can also be helpful to ReTweet another person’s Tweet. ReTweets do count towards trending topics, they also ensure all your followers see the Tweet. Another option is to quote from a Tweet, you can do this easily on your phone using certain Twitter applications by selecting ReTweet and then choosing to quote. It is also easy to do this on your laptop by copying and pasting the part of the Tweet you wish to share.
How will this raise awareness?
Networking and collaborating together through Twitter will make our Tweets more interesting to others, and non-sufferers are much more likely to read them and check out our links. It will also greatly increase the chance of their being enough of us active on Twitter when a major news story breaks or a significant paper is published for our efforts to result in it making the Trends list and thus bringing it to the attention of the world.
Topics break into the Trends list when the volume of Tweets about that topic at a given moment dramatically increases. Sometimes, popular terms don’t make the Trends list because the velocity of conversation isn’t increasing quickly enough, relative to the baseline level of conversation happening on an average day.
To this end it is in our best interest to have organised events where we select a time to have a group conversation. It is also advisable for us to use unique hashtags for events, hashtags that have not been widely used beforehand such as #may12th.
You may wonder how getting a specific hashtag such as #may12th in the Trends list will help spread awareness. That of course comes down to the content of our Tweets, mentioning and giving links to significant information on the neuroimmune disease(s) in question during each event will be vital. It is advisable to have links ready in advance of planned events to make sharing this vital information easier.
For this initiative to work it will need to be embraced by the neuroimmune disease community as a whole and we welcome feedback and suggestions concerning this awareness venture. Contact the Action Now team at firstname.lastname@example.org
Our first Twitter event is scheduled for ME/CFS and FM Awareness Day, 12th May 2011. Details coming soon.
Follow @ActionNowInfo for news and updates on Twitter events.