The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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PACEwashed - new term to use on Twitter and elsewhere

Discussion in 'Action Alerts and Advocacy' started by CFS_for_19_years, Nov 14, 2015.

  1. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I thought PACEwashed would be a good term to describe doctors and counselors who've taken the results from PACE at face value and are recommending CBT and GET to their patients. On the other hand, anyone who has done an about face is NoLongerPACEwashed.

    Here's an example of a doctor who used to cite PACE (was PACEwashed) and no longer does (NoLongerPACEwashed).
    https://twitter.com/MBVanElzakker/status/665290752050728960

    I'm just a newb on Twitter and there are many of you out there with many followers such as @Kati and @Tom Kindlon who are tweeting to James Coyne and others. I wonder if the term is interesting enough for someone like James Coyne or David Tuller to pick up. If anyone likes the term PACEwashed for their tweets or article comments, I'd be delighted to see it used.

    If you find it kind of boring, that's OK too. It's the most creative moment I've had all day, so don't expect anything more to come.
     
    Woolie likes this.
  2. Kati

    Kati Patient in training

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    Hi @CFS_for_19_years the fancy hashtags do not matters much other than for us the patients. Only the patients would know to look for that particular hashtag.

    For instance PACEGATE has been coined by the patients. If you search PACEGATE on twitter, it will finds all the tweets containing this hashtag. Do you think that physicians, scientists, psychiatrists lookimg for information on PACE trial will think of searching for PACEGATE? No.

    For new tweeters, I'd suggest to keep it simple. Use common hashtags, with the intention to reach out to bigger crowds. #science #openaccess #medicine #bioethx #rheum #meded #stigma #philanthropy are just examples of that. You can look at health care hashtags to see what are the most commonly used hashtag in health care. The same website keeps a tab on the tweetchat schedules.

    Also use your 140 precious characters to address to people in particular. The health minister. Your congressman, @NIHdirector... Etc. Make sure you follow these public figures so when they say something you can engage with them and once in a while mention your cause. However if you are not replying to someone, but want to engage a wider audience, do not start your tweet with @soandso. Make sure you insert a character, oftentime a dot
    . @soandso

    For those who are starting with twitter, follow all kinds of people. Do not only follow ME patients, because then you are preaching to the choir. Venture outside our community. Health care tweetchats are great for that.
     
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  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @Kati, thank you for the great tips on how best to use twitter. I've been reading tweets and haven't figured out how to twitter make an impact. Your suggestions should help me get over that hump, and anyone else who is new to the twitter-thingy.

    I'll look for more health care people to follow then. That shouldn't be too difficult.
     
  4. Kati

    Kati Patient in training

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    You can look at who people follow. You go on their profile page and you will have a list of followers. Check it out. Also make sure you have a good profile. Put up a picture and a quick description. It helps people to know you are not a hacker nor a porn star :rolleyes::jaw-drop::wide-eyed:
     
    Last edited: Nov 14, 2015
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  5. Sean

    Sean Senior Member

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    #pullingaPACE

    :whistle:
     
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  6. SOC

    SOC

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    There are too many things I can think of this meaning. I'd be using it for just about every behavior I dislike. :p
     
    Sean likes this.
  7. Sean

    Sean Senior Member

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    Yeah, great, isn't it. :D
     
    SOC likes this.
  8. Kati

    Kati Patient in training

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    For those who want more hashtag options, here are a couple which
    I just found out about

    #OpenData
    #OpenCon (seemingly there was an open access, open data conference which just finished)
     
  9. Aurator

    Aurator Senior Member

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    Depending on how you look at it, these people have either been PACE-washed or they've surrendered themselves to the PACE that passeth all understanding.
     
    CFS_for_19_years likes this.

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