How to use Twitter for ME/CFS awareness

Helping raise ME/CFS awareness during #May12th, #MillionsMissing, or any day of the year is easy with Twitter, allowing your voice to be heard.

It you don’t use Twitter, please consider setting up a Twitter account for those times when we need to reinforce a message. If we get a hashtag trending as #MillionsMissing did in London in May 2016, then it will advance awareness.

Once you have a Twitter account (see link further below for how to sign up) start by pressing the ‘like’ or ‘Retweet’ button. The ‘Retweet’ button is much more powerful so at least do that. You don’t have to create Tweets or comments, just simply ‘like’ and Retweet. However, Retweets are also more effective when you add your own comment so don’t be afraid to advance to that step.

The best way to learn is to simply have a go.

Find people you know and ‘like’ and Retweet their Tweets. As you learn what to do, you can then start to create your own. For a list of people sending Australian ME/CFS Tweets, go to and click on Followers. (You’ll find this under the banner photograph).


What You Will See in a Tweet

  • The image shown here is a Tweet by MEAction.
  • @Unrest   It is directed to Unrest.
  • @JenBrea   It is also for Jen Brea to see.
  • A comment
  • A video link
  • #TEDTalkME is the hashtag that people can use to look up this topic.

Under the Tweet

  • The grey arrow pointing left: click on this to reply to the person who Tweeted.
  • The two grey arrows pointing up and down is the ‘Retweet’ button. You will be given the option to simply Retweet the same Tweet or add your own comment to the Tweet. The number shows how many Retweets there are.
  • The heart is the ‘like’ button and the number indicates how many ‘likes’ the Tweet has had.


Using hashtags on Twitter:

  • People use the hashtag symbol (#) before a relevant keyword or phrase in their Tweet to categorize those Tweets and help them show more easily in Twitter search.
  • Clicking or tapping on a hashtagged word in any message shows you other Tweets that include that hashtag.
  • Hashtags can be included anywhere in a Tweet.
  • Hashtagged words that become very popular are often Trending Topics.

Tips for using hashtags:

  • You cannot add spaces or punctuation in a hashtag, or it will not work properly.
  • If you Tweet with a hashtag, anyone who does a search for that hashtag may find your Tweet.
  • We recommend using no more than 2 hashtags per Tweet as best practice, but you may use as many hashtags in a Tweet as you like.
  • Type a hashtagged keyword in the search bar to discover content and accounts based on your interests.

Some ME/CFS Hashtags

When you type in a hashtag a few options will come up that you can choose from or you can create your own.
Eg:   #May12th   #MEcfs   #MECFS   #pwME   #MillionsMissing   #putoutyourshoes   #SevereME   #MyalgicE   #invisibleillness

Twitter Glossary

Tweet (noun)
A Tweet may contain photos, videos, links and up to 140 characters of text.

Tweet (verb)
The act of sending a Tweet. Tweets get shown in Twitter timelines or are embedded in websites and blogs.

A username is how you’re identified on Twitter, and is always preceded immediately by the @ symbol.
Eg: @AusGov  is the user name for Australian Government News.
People will use your @username to mention you in Tweets, send you a message or link to your profile.

A hashtag is any word or phrase immediately preceded by the # symbol. When you click or tap on a hashtag, you’ll see other Tweets containing the same keyword or topic.

Subscribing to a Twitter account is called “following.” To start following, click or tap the Follow icon next to the account name on their profile to see their Tweets as soon as they post something new. Anyone on Twitter can follow or unfollow anyone else at any time, with the exception of blocked accounts.

Retweet (verb)
The act of sharing another account’s Tweet to all of your followers by clicking or tapping on the Retweet button.

A Trend is a topic or hashtag determined algorithmically to be one of the most popular on Twitter at that moment.

Some helpful links

Signing up with Twitter:
The Twitter glossary:
New User FAQs:
Getting Started with Twitter:

Thank you to the volunteers from the national patient community who helped to write this guide. If you think something needs changing or have some new information to add, please let us know via our contact page.

This guide was last updated on 24 April 2017