https://twitter.com/TomKindlon/]
http://on.fb.me/p7yVVd i.e.
https://www.facebook.com/notes/xmrv-global-action/guide-to-twitter-what-is-it-and-how-to-use-it-for-advocacy/10150336304066797
Guide to Twitter: What is it and how to use it for advocacy
by XMRV Global Action on Friday, September 30, 2011 at 7:43am
What is Twitter?
Twitter is one of many form of social media which increases your
capacity to network and share information to people, organizations,
governments, and each other.
Nowadays government officials and newspapers, journalists, all have
one or more Twitter accounts.
Twitter allows you 140 characters per messages, including links,
punctuation and spaces.Usually Twitter will shorten the link you
provide, and that usually will take away 20 characters, and leave you
with 120 remaining. You can also share pictures easily.
You can "follow"anyone you like and don't have to ask permission to
follow someone. If someone sends you offensive message, you can block
them.
Most cell phones will have a Twitter program on them, or you can
upload an "app" from the apple store. Certain programs are also
available for your laptop or desktop. For instance Tweetdeck allows
you to have a bigger view of your feeds and also follow by topics.
Echophon is an app I use on my IPAD. Some apps allows you to see your
facebook, google, hotmail and twitter account all on one screen. I do
not use it because my eyes find it too busy and I can't focus.
Twitter language
When you address someone with the sign @ it sends them a message to
their e-mail address, and a notificaton on your Twitter screen. Your
own nickname is then read @nickname (without space).
The hashtag sign is used to highlight certain topics that then become
searchable. It is not necessary to repeat what you said inyour tweet.
Usually I incorporate the hashtag within my sentence. For instance
#IACFSME presenter @LennyJason (just an example) demonstrated that the
empirical #mecfs definiton is not sensitive.
(I didn't count the #of characters)- In this example, IACFSME and
MECFs are words that will be researched to have a list of all recent
messages the most recent first. Usually your Twitter dashboard will
provide you with the most searched topics. For instance right now,
#Halloween and #Glee.
There is a website that compiles and registers health care hashtags.
http://www.foxepractice.com/blog/healthcare-hashtags-social-project
This website is very valuable for advocacy. It lists incoming
scientific conferences and their hashtags and also Tweet chats related
to healthcare. Tweet chats allow you to network with other health care
professionals and discuss topics related to health care. To learn
about them, the best thing is to experience them. Take a look at the
Tweet Chat schedule and jump right in. Please note that all you write
is being recorded, and can or will be shared. Here is the calendar:
http://www.foxepractice.com/healthcare-hashtags/tweet-chats/ Make sure
you show up at the right time zone and add the hashtag of the chat
with each messages so others participants can read your messages.
One good strategy to use for advocacy is to find out what are the big
incoming conference. Say, CROI is coming... you might be interested to
who and what is being tweeted. You may add your message to #CROI with
a message that you want other people who follow this thread to see.
For instance you might want retrovirologists to know that Ian Lipkin
is conducting a #XMRV research and resultsare due by early 2012.
Some chats I have participated in, #HCSM (health care social media)
#MDchat, #HCSMCA (for Canada). The moderator will provide pre-chosen
topics and people discuss as it relate to the topics. Patiemts are
more than welcome to participate in these chats and appreciated too.
Lots of topics applieds to us and provides different point of views.
And if the conversation brings on a topic where you mention ME/CFS,
then you will educate all in the chat about our illness challenges.
Make sure you stay on topic. The best place to interact in a chat is
by using this website: http://tweetchat.com/. Log in with your Twitter
account, enter the hashtag for the tweet chat and you're ready to go.
If there are lots of people chatting it may be hard to follow and to
comment.No worries, you will get used to the flow of it. At the end of
the chat they will give you a link of the chat history if you are
interested.
***********************
Random tips about twitter:
- Don't expect to read all of your feeds. You will miss some, all the
time. The most importamt omes will be flagged for you as mentions
(mt), RT (retweets) or Personnal messages (PM).
- A lot of your feeds will not be relevant to you. However at least
some of them will be worthy of RT (retweeting, or forward to your
followers) and some of them will give you an opportunity to promote
your cause, through answering the person or organization that sent the
tweet inthe first place.
- Who to follow on Twitter? Start with your favorite advocacy
organizations. See who they follow, and follow them as well. Now look
at who these people follow and see if they are relevant to you.
- In order to reach out to more people, go beyond following other
patients with ME. What is needed is tweeting about ME globally, reach
out to science people, university researchers, pharmaceutical
companies, philantropists, governments, your local newspaper, bigger
news agencies. Look up websites and see if the have a twitter account
and follow them.
- Tweet wbout your own experience, the features of MECFS, statistics
with me/cfS, the most recent news and papers just issued, or older but
very relevant papers, for instance, the spinal fluid proteins in CSF
of ME and Lyme patients. aim at educating, networking, pique
scientist's curiosity about our illness.
- Forward other people's news as paying it forward to them, and they
will return the favor when you tweet something that is interesting to
them.
- Follow Friday is a Twitter tradition, or a way to pay tribute to
your followers, and a good way to encourage others to follow them. #Ff
is usually on Fridays, and includes a list of people that you like,
140 characters worth of it.
I had a sweet long list on people to follow- from many countries but
it got lost in WWW land and I can't find it. So here is a short list
for UK people.
You can always check out @XMRV_GA and check out our followng and
followers list.
UK Tweeple (twitter people to follow)
@number10gov. UK prime minister
@sciencebased David Bradley science news and views
@virtualresistan
@brit_newsman
I hope this help. Happy Tweeting!
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