Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Quick advocacy actions

Discussion in 'Action Alerts and Advocacy' started by Jenny TipsforME, May 12, 2017.

  1. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    For ME Awareness, would it be a good idea to share things people can boost on social media with just a couple of clicks?
     
    Joh, Cohen2, Jennifer J and 7 others like this.
  2. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
  3. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
  4. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    Obviously today RT and sharing all #MillionsMissing posts is :)
     
    ahimsa likes this.
  5. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    Eg I see this comment on Reddit "
    "ME is the inappropriate name, it suggest a cause of the disease nobody has yet to prove or even make likely, and indeed there have been several other names around the globe (and still are).

    Chronic fatigue syndrome is an appropriate name as it simply describes the symptoms. Which is the only thing we know. The Newsweek article when it came out called it Yuppie flu, that is another option if you feel CFS isn't good enough.

    Describing syndromes in a way which makes it sound as if they have a specific pathology is dishonest, and it does a disservice to those affected by it."

    Don't have energy to reply effectively to this today! https://www.reddit.com/r/medicine/comments/6as4he/what_would_florence_do/
     
  6. Emily Taylor

    Emily Taylor

    Messages:
    28
    Likes:
    210
    Los Angeles, CA
  7. ChrisD

    ChrisD Senior Member

    Messages:
    178
    Likes:
    352
    East Sussex
    Hi
    I am posting on my twitter account today with the #millionsmissing , any suggestions of important or stand-out tweets? https://twitter.com/Fatiguemunity
     
    Jenny TipsforME likes this.
  8. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    @ChrisD i like











    https://twitter.com/megmundell/status/863027676952502272
     
    ahimsa and SamanthaJ like this.
  9. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    Yeah, that was pretty bad, to put it mildly. I did a reply but this person is apparently a troll and cares nothing about reality so I don't expect any meaningful response.

    But @Jenny TipsforME , the link in your post appears to have disappeared - it was there and now it's gone (I think - I still find Reddit a little confusing! :confused:)
     
  10. *GG*

    *GG* Senior Member

    Messages:
    6,112
    Likes:
    4,694
    Concord, NH
    I am Not giving Common Cause my info, have a better link? I am not down with the Progressives!

    "Go here to FIND YOUR SENATORS and US REPRESENTATIVE: www.commoncause.org/take-action/find-elected-officials/ You can click the “email” link next to the picture of your member or go to the member’s website to identify a staff e-mail address there."

    GG
     
  11. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    @Mary thanks, :)

    I can still see link
     
  12. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    He or she is a troll, actually it was quite obvious from their first post. I'm not going to waste any more energy on them! But maybe others may get a little education :sluggish:

    Jenny, when I go to Reddit it shows an apparent link for your blog but when I click on it the link says "removed". So the link is there, but it doesn't go anywhere.
     
  13. ahimsa

    ahimsa Sick since 1990

    Messages:
    1,844
    Likes:
    4,268
    Oregon, USA
    @Jenny TipsforME

    Aww, thanks for posting a link to one of my #MillionsMissing tweets. :) I could not take any photos this year so I just used photos & images from last year.

    I was happy to see that both NIH and CDC posted something about ME Awareness Day.

    I created a thread for the CDC blog post here - http://forums.phoenixrising.me/index.php?threads/america’s-hidden-health-crisis-hope-for-those-who-suffer-from-me-cfs-posted-by-cdc.51430/

    And here's a tweet from Solve ME/CFS group with a link to NIH statement

     
    Mary, Jenny TipsforME and SamanthaJ like this.
  14. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    The CDC actually had 2 pages for May 12 :thumbsup:

     
    ahimsa, Mary, SamanthaJ and 1 other person like this.
  15. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    @Mary I agree not worth wasting energy on trolls but I was deflated to think that's what other people would see.:( I'll add the link again.

    I only commented on CFS because when I shared a newspaper article on Reddit Americans complained they didn't know what ME was...

    What did cheer me up was seeing this tweet from Andy Burnham (UK politician)


    I RT anyway and then thought "hang on on that formatting (of the text image he's sharing) is really familiar, the words are familiar too. Oh because I wrote them!" It's a snippet from a post I wrote for the uk stopGET petition... :lol:
     
    Joh, ahimsa, Mary and 3 others like this.
  16. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    Right now this is going on

     
  17. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
     
  18. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,125
    Likes:
    3,771
    Bristol
    Valentijn likes this.

See more popular forum discussions.

Share This Page