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The Twitter Guide for helping the Blue Ribbon Campaign for ME/CFS

Twitter is a social media platform that many people now use for keeping in touch with friends, making new friends, talking about news, sending uplifting messages, and interacting with celebrities and influential people. If you have one spoon a day, then getting and using a twitter account is one way you can use a spoon to spread the message far and wide. With twitter you have people who follow you, and people that you follow. You see the messages of the people you follow; however, you only see a follower’s message if they send you a Direct Message (DM) or an @reply. On Twitter it is considered a form of respect to follow back someone who follows you. Therefore, feel free to use something like Tweetlater so that you can set up your account to automatically follow and unfollow people. This will help you wade out the people who want to speak with you quickly as opposed to the marketers who just want followers will follow you, so you will follow them, and then unfollow you. Having this automated will save you time.

Etiquette

There is an etiquette that has grown on Twitter that mimics the real world. Following someone is like smiling or saying hi to someone. Tweeting someone is a good way to start a conversation such as “ @Killandra love what you’ve done to the website!” This is first contact. People with large followings are more likely to read their mentions, rather than their feed. So if you want someone’s attention even if they are following you back, it is better to tweet them directly.

Direct Messaging

Now to the DM. Automatic Direct Messaging is most often used by businesses and people who mean well, however, it is very alienating to get a DM from someone you don’t know and have never met, and who right away are giving you their link or telling you about their cause. The DM has become a lot like the salesman steps in with his sales pitch before even knowing what you are looking for. I suggest the gentle approach of not DMing anyone until you’ve talked to them on twitter for awhile.

Sending out Links

Whether it’s a blog or business, most people are on twitter to send out a message. It is expected that you will send out your own messages with links in your own feed (This is your status where you answer the question what am I doing”

For example my status might read: “#MECFS is more common than AIDS, Breast Cancer, and Lung Cancer --L. Jason #brc4ME http://ow.ly/97kP Display the blue.” This message goes out to all the people who are following me and if they like it they can Retweet (RT) it to their followers. This allows the message to spread further.

This is different from a message sent directly to another person which will look at this “@Killandra Go Daddy is ok nothing wrong with it are you having issues with it?” So this is a message from someone to me. Only me and the people following the person who sent the message can see it.

The power of the RT (Re-Tweet)

Rting a message is a way of saying “I like this message” or “this message is valuable”. Often the original message needs to be summarized in order to fit in the original senders name and the initials RT. So an RT looks like this.

“RT @Killandra: What I wish for you is: validation, compassion, understanding, empathy, respect, support, and health.”

The RT at the front of a message is important as it indicates to others that you did not write the tweet. However, while the RT is great at spreading one message to more readers, its true value lays in the relationships it allows you to build. If you have a cause, or a business, or something you want others to read, do not just keep your feed about what you’re passionate about. It makes your feed more interesting if you RT other peoples tweets and helps you build valuable relationships. The better your content, the more people will follow you.

Tweeting with Celebrities or Influential people on Twitter

More and more celebrities and influential business and marketing people are flocking to twitter everyday. This means you can read about what @MileyCyrus ate for breakfast at the same time you chat on twitter with your closest friends. However, let’s be honest, while it's wonderful finding out that these people of influence are just like us, we’d like them to care about what we care about.

The first thing to remember is that heavy hitters on Twitter have large followings so their tweet mentions are out of this world. @aplusk’s are a blur.  If you want them to talk to you, or ask them to listen to your message, you have to go a few steps further in your tweeting etiquette.

First,  tweet them only when they are online so that your message is more likely to grab their attention.

Second, send your well crafted message and link once a day when they are online. Do not bombard them with messages about your cause, or our cause, or anything else. One  message with a link.  Then as they continue sending messages out if you see something you want to respond to, do so, but do so conversationally, without reference to the message you are trying to get across.  If you are lucky, an influential person will RT your message with link or part of your message. This will spread your message far wider. If this happens, thank them, and ask your followers to thank them, so that they realize what an impact they have had.  Actually, this is good etiquette to use with everyone on twitter, it's one thing to have your feed filled with your links, it's quite another to spend your day sending mentions to people with your link in it.

Third, if someone is engaged in conversation with an influential person as part of our cause or another cause, please do not break into the conversation in order to get the influential person to speak to you.

First it is rude.

Second, it confuses the influential person as to who is representing what.

Third, it distracts from the message.

If an influential person speaks to you about the Blue Ribbon Campaign for ME/CFS, please make it clear that you support the Blue Ribbon Campaign because you are a patient/carer/supporter but not an official representative for the BRC. The reason for that distinction is that is important for the influential person to hear your story, and why you are tweeting, but we cannot run the risk of a misperception destroying the work of the Blue Ribbon Campaign.

#Hashtags

These were started to help people find likeminded people, and tweets on subjects in Twitter. For example there is #charitytuesday which you use in tweet with your favourite charities, #FollowFriday used on Friday in tweets about your favourite tweeters for others to follow.

The Blue Ribbon Campaign for ME/CFS hashtags are: #brc4ME #brcampaign #MECFS . You will see how these become important the more you use twitter.

Please click on the  "Tweets 4 BRC" page for Tweet ideas and links.

© Andrea Martell. All Rights Reserved. Please email info@blueribboncampaignforME.org about adapting this twitter guide for your cause.
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