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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Guide to Social Media and Twitter as it relate to advocacy efforts.

Discussion in 'Action Alerts and Advocacy' started by Kati, Sep 30, 2011.

  1. Kati

    Kati Patient in training

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    Guide to Twitter: What is it?


    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.

    More on what Twitter is and how to use it over here:http://mashable.com/guidebook/twitter/

    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.


    The following was meant to be a list of many people to follow- however I have lost this long list to my ipad- not sure where it went... But I will leave those few that were worthy for our friends in the UK.
    UK Tweeple (twitter people to follow)

    @number10gov. UK prime minister
    @sciencebased David Bradley science news and views
    @virtualresistan
    @brit_newsman
    WillowJ and justinreilly like this.
  2. Spring

    Spring Senior Member

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    If you follow 'Drspeedyandme' you are always up to date to the important news on ME.

    Look at his followers and you will find a lot of other patints who talk to each other.

    It's nice to have contact this way.

    See you,
    Spring
  3. Kati

    Kati Patient in training

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    Spring, while it's nice to talk to other patients, here I suggest to go one step farther amd get in contact with other communities in order to get exposure and to do advocacy for our illness, our cause. We can list all of the people in our own group, but until we reach out and talk to others about what's going on for us, nothing will change.
  4. Dolphin

    Dolphin Senior Member

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    Adjusted from: http://forums.phoenixrising.me/show...ept-22-25-2011&p=207388&viewfull=1#post207388

    Here are some accounts that tweeted info during the IACFS/ME conference if people want some more to consider:

    https://twitter.com/CortJohnson

    http://twitter.com/sciencecohen

    http://twitter.com/DeBortgjemte (A lot of these are in some Scandinavian language - Norwegian I think)

    http://twitter.com/MEFMACTION

    https://twitter.com/oslersweb

    https://twitter.com/pandoraorg

    http://twitter.com/TomKindlon

    http://twitter.com/XMRV_GA
  5. Dolphin

    Dolphin Senior Member

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    I still there can be value in people tweeting even if they don't do this. Many/most people will likely have followers from outside the patient community e.g. family and friends from their area. Messages get passed around (re-tweeted) on Twitter so much, lots of different people see messages. It might be a bit sporadic but still think it can have a value.
  6. Kati

    Kati Patient in training

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    Agreed. It can be a s powerful as you wamt it to be is my message. We have the opportunity to spread the news.
  7. Spring

    Spring Senior Member

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    Amongst my followers and people I follow there is a lot 'creating awereness' being done. We spread links to important articles and we tweet to politicians and famous people. But also to doctors and national television/news programs. Some people are really active on this allmost everyday! And this is already going on for more than a year.

    On may 12th me, and some others tried to make #mecfs trending. In the Netherlands we were, accounting to the numbers of tweets. But we weren't officially mentioned by Twitter because of the tweets came from to few people. Most of us also speak english so we have international contacts also.

    If we are connected on Twitter than we could make it this May. But it remaines difficult worldwide because of time differences.

    We should agree about using the same hastag. #mecfs is used a lot so far, but as a lot of people don't like the 'cfs' part, some are using #ME_ICC now or in addition. (ME according to the new International consensus Criteria).
  8. May12th

    May12th

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    I've had a request that we standardize the hashtag for may 12th for 2013. How do you suggest we do that? Can it be #may12th or #mefm? We should start using the std hashtag now so there isn't a learning curve next may. What do you think?
  9. Kati

    Kati Patient in training

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    I'd personally suggest remaining consistent. There are already quite a few hashtags for ME-
    so keep it to #may12th

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