The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

'Occupy @NIHdirector campaign' on Twitter

Discussion in 'Action Alerts and Advocacy' started by Kati, Aug 22, 2015.

  1. Kati

    Kati Patient in training

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    Join me in a Twitter campain to 'Occupy @NIHdirector' (Francis Collins twitter account).
    i have several tweets on my twitter account @Katiissick, feel free to retweet or to make your own tweets asking for funding parity.
     
  2. Bob

    Bob

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    England (south coast)
    Valentijn and Sushi like this.
  3. shannah

    shannah Senior Member

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    Great idea @Kati and what a great graphic to accompany it!

    Thanks for posting the links @Bob
     
    Bob likes this.
  4. Kati

    Kati Patient in training

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    beaker and Bob like this.
  5. Kati

    Kati Patient in training

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    I Thought It Was a Typo…" Researcher new in #mecfs field comment on the state of #NIH funding solvecfs.org/i-thought-it-w… @NIHDirector #Congress (https://twitter.com/Katiissick/status/634881116042760192?s=17


    A Family Tells the Personal Impact of #mecfs @NIHDirector a whole disease is left behind. Pls do something #hcldr openmedicinefoundation.org/2015/08/13/a-f… (https://twitter.com/Katiissick/status/634829230707097600?s=17)

    Responses to NIH who is trying 2explain why grant application from Nobel laureates was refused. #stigma @NIHDirector meaction.net/wp-content/upl… (https://twitter.com/Katiissick/status/634486179790999553?s=17)


    Ron Davis on why his NIH proposal was rejected meaction.net/2015/08/20/ron… @NIHDirector @NIAIDNews #Congress (https://twitter.com/Katiissick/status/634485550951612416?s=17)

    My public comment for today's #CFSAC meeting: @NIHDirector Go Fish! occupycfs.com/2015/08/17/cfs… (https://twitter.com/knittahknits/status/633832735723810816?s=17)
     
    beaker, Valentijn, SOC and 1 other person like this.
  6. jimells

    jimells Senior Member

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    How about demanding his resignation?
     
  7. Kati

    Kati Patient in training

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    Tweet for today:

    #mecfs would be a disease best suited for #bigdata & #PM101 personalized medicine. @NIHDirector the ball is on your side.

    Feel free to copy and post on twitter or to retweet from my twitter feed @katiissick
     
    beaker, waiting, catly and 3 others like this.
  8. beaker

    beaker ME/cfs 1986

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    Great idea @Kati I've been RT ing . Hope we can get others to look at them and do the same. Thanks for getting the ball rolling on this.
     
    catly likes this.
  9. Kati

    Kati Patient in training

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    Thank you @beaker. Somehow I feel, we need to gain support from Director Collins.
     
  10. Kati

    Kati Patient in training

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    waiting, SOC, catly and 2 others like this.
  11. Kati

    Kati Patient in training

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    Tweet for today:

    An Open Letter from Researchers 2 Sen Mikulski: Pts suffering from #MEcfs deserve $ cfstreatmentguide.com/1/post/2015/08…@NIHDirector#Congress

    Feel free to copy and paste, alter, or simply retweet from my twitter account. Each retweet or tweet as is sends a notification to Dr Collins about ME. Let's Occupy NIh director. :sluggish:
     
    beaker, waiting, Bob and 1 other person like this.
  12. Kati

    Kati Patient in training

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    My retweet of the day comes from @JanetDafoe, Ron Davis's wife:

    "@TomKindlon@firestormer Ron Davis is going to apply for NIH funding every cycle. He is never giving up!" #MEcfs @NIHdirector

    let's occupy @NIHdirector Crancis Collins and Secretary Burwell (@SecBurwell)
    Feel free to retweet from my account @katiissick, modify tweet, or make new tweets.
     
    catly, beaker, ahimsa and 5 others like this.
  13. ahimsa

    ahimsa Senior Member

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    @Kati, I've just found this thread and added it to my list of watched threads. Thanks for your suggestions so far.
     
    beaker and Kati like this.
  14. beaker

    beaker ME/cfs 1986

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    I retweeted to other Congressional House and Senate Members on appropriation and health committees, as well as Congressional leaders. Please RT and/or favor ! Yes, even if you already have RT the original link Kati gives.
    OK to do it even if not US citizen !
    There are 11 tweets in all to cover all these reps. But the hard part is done. Just a few clicks please.

    https://twitter.com/beaker1986/status/637570396750004224
    https://twitter.com/beaker1986/status/637570318853402624
    https://twitter.com/beaker1986/status/637570248498151424
    https://twitter.com/beaker1986/status/637570119191908352
    https://twitter.com/beaker1986/status/637570036677410816
    https://twitter.com/beaker1986/status/637569926182633473
    https://twitter.com/beaker1986/status/637569829470380032
    https://twitter.com/beaker1986/status/637569737053110272
    https://twitter.com/beaker1986/status/637569659622039552
    https://twitter.com/beaker1986/status/637569545255976961
    https://twitter.com/beaker1986/status/637568978911653888

    Thank you ! Let our voices be heard !
     
    Kati and ahimsa like this.
  15. ahimsa

    ahimsa Senior Member

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    @beaker, great job! I just marked them all as favorites - hope I got all of them!

    I was too embarrassed to re-tweet since it was my tweet you copied. I don't know twitter etiquette but it seems too self-aggrandizing for me to re-tweet something which has my own tweet embedded in it.

    (online early today because I've got other stuff to do and won't be back until tomorrow or Monday)
     
    beaker likes this.
  16. Kati

    Kati Patient in training

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    Done! It took just a minute.
     
    beaker likes this.
  17. beaker

    beaker ME/cfs 1986

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    If you are retweeting the same message only tweeting to target tweeters, I think it's ok. Or better yet, retweet your original and just cut and paste the names to it.
    In other words : retweet your original not my retweet ! and add the names.
    wow I think I am talking in circles. Hopefully you can figure out what I am trying to get at !
    I have edited a couple times trying to make it sound better but bad brain fog setting in.

    Thanks for jumping in on this your first tweet started it all !

    Have a nice weekend.
     
    Last edited: Aug 29, 2015
  18. Kati

    Kati Patient in training

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    SOC likes this.
  19. Kati

    Kati Patient in training

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    Another tweet for today:

    Pts who got #mecfs from '84 Tahoe and Lyndonville epidemic r either still sick, contracted cancer or r dead. We are millions @NIHdirector

    Let's occupy NIH director.
     
    beaker likes this.
  20. Kati

    Kati Patient in training

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    beaker, ahimsa, Bob and 2 others like this.

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