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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Requesting photos for #MillionsMissing project on Instagram

Discussion in 'Advocacy Projects' started by ahimsa, May 18, 2016.

  1. ahimsa

    ahimsa Rarely on PR now

    I'm posting a new thread for this because I thought it might get lost in the Fundraising forum.

    There's a new Instagram account for the #MillionsMissing protest:

    @ellesbelles is asking folks to send in a photo to illustrate what they've been missing since getting ill. For more details see this message
    Effi, mango, Silencio and 1 other person like this.
  2. Jennifer J

    Jennifer J Senior Member

    Southern California
    @ahimsa, thank you for posting this. Another great idea! I hope others can send in their photo of what they've been missing since they've been ill, too.

    Thank you @ellesbelles and everyone for working: to make us visible, for funding for research, for good studies, and in many different ways to make it better.
  3. Silencio

    Silencio Senior Member

    Thanks @ahimsa.. Here is the message again:

    PR folks.. Would love your participation in the #MillionsMissing Instagram account.

    Would love to represent the full picture, and we have more women so far, so more men, children, would give a broader image of the disease.

    Send a photo of you doing something you love and miss back when you were well to

    Include the year you got sick, your location, and any other information you'd like to include about what you miss, and your life then and now. Have a look to get ideas.. I try to combine stories with facts about the disease.

    Thanks so much in advance! Pls share!
  4. ahimsa

    ahimsa Rarely on PR now

    I sent in a photo from my hiking days. I also used it to make a poster (tweeted it today, pinned tweet):


    (click on thumbnail to enlarge)

    I've been mostly offline this week (family visit planned months ago, before protest) but have managed to to a bit of posting and tweeting.

    And I've scheduled a bunch of tweets for May 25th. That morning I'll be driving to the airport. When I get home I'll be doing a lot of resting and recovery from the family visit! Speaking of which, need to get offline again. :)
    mango, Effi, Jennifer J and 2 others like this.
  5. Old Bones

    Old Bones Senior Member

    I sent two photos with the following text:

    "These photos were taken almost 30 years ago while on our honeymoon in Austria and Switzerland. It was inconceivable that 2 1/2 years later, my active sporting life would be ended by an illness I'd never heard of -- ME. I'm one of the lucky ones -- my husband has stayed by my side despite devastating lifestyle losses.

    I'm missing: My active outdoor pursuits
    My husband is missing: His hiking partner

    Realizing that you have more photos of women than men, the second photo could "scratch out" the man's boots, implying he is the one missing."

    ClimbAustria.jpg BootsSwitzerland.jpg

    mango, Effi, Sushi and 1 other person like this.

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