Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Social Media thread - advocacy action alerts

Discussion in 'Action Alerts and Advocacy' started by Bob, Aug 18, 2015.

  1. Bob

    Bob

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    Hi, this thread can be used to post links to social media items that require some sort of advocacy action, e.g. the action could simply be sharing Facebook posts or favouriting Tweets, or it could be making a comment on Facebook, or responding to a tweet, or thanking someone for taking an interest in ME.

    Please feel free to post anything that you'd like people to respond to.

    There is another thread (click here) for interesting or fun items from social media that don't need responding to or any advocacy action taken.
     
    Last edited: Aug 18, 2015
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  2. Bob

    Bob

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    Dolphin and mango like this.
  3. Bob

    Bob

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    Scarecrow, Dolphin and mango like this.
  4. ahimsa

    ahimsa Senior Member

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    Thanks for this thread, @Bob. I've been mostly offline for a couple of weeks (here, twitter, etc.) but I'm trying to ramp up again.

    By the way, what's your twitter id? You may have posted it but I've forgotten.
     
    Last edited: Aug 27, 2015
    Bob likes this.
  5. ahimsa

    ahimsa Senior Member

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  6. Bob

    Bob

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    @ bobbobme
     
  7. waiting

    waiting Senior Member

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  8. ahimsa

    ahimsa Senior Member

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    Bob likes this.
  9. beaker

    beaker ME/cfs 1986

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    Kati has a thread w/ a tweet campaign she has been promoting.:
    http://forums.phoenixrising.me/index.php?threads/occupy-nihdirector-campaign-on-twitter.39439/

    I just posted something over there and thought it is worth repeating here :

    kati wrote :
    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:

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    I wrote :
    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 !
     
    ahimsa likes this.
  10. *GG*

    *GG* Senior Member

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    Bob likes this.
  11. beaker

    beaker ME/cfs 1986

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  12. *GG*

    *GG* Senior Member

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    I am not saying I agree with it, just a way to possibly raise more awareness of our plight?

    GG
     
  13. beaker

    beaker ME/cfs 1986

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    I see your point. But I think it is so off topic, that it would get lost.
    The comments are going to be(and are) political.
    I think it is basic on line etiquette to stay on topic. I have seen where a certain group of lyme patients jump in on comments that aren't directly connected and they haven't been well received.
     
  14. ahimsa

    ahimsa Senior Member

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    This tweet, an article written by Julie Rehmeyer about science and ME/CFS, is definitely worth re-tweeting:

    https://twitter.com/julierehmeyer/status/641339023730962432

    For those who don't have twitter, here's a link to the article mentioned in the tweet:

    http://www.senseaboutscienceusa.org/epistemically-challenged-julie-rehmeyer/
    (updated link to go to original site)

    First paragraph from the article:
     
    Last edited: Sep 9, 2015
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