Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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#MEAction and Millions Missing UK

Discussion in 'Millions Missing Campaign' started by AndyPR, Jul 4, 2016.

  1. AndyPR

    AndyPR RIP PR :'(

    #MEAction are expanding and now have a separate UK Facebook page - www.facebook.com/MEActNetUK/ - soon, just like the Hell's Angels, there will be chapters everywhere.... ;)

    They are looking for volunteers to run Millions Missing protests in UK locations on Tuesday 27th September outside of London - link (https://www.facebook.com/MEActNetUK/posts/1629296337388323:0) to the relevant Facebook post;
    Link in quote is to http://millionsmissing.meaction.net/

    @JaimeS hopefully this post is helpful, if not we can ask one of the mods to delete it.
     
    Comet, halcyon, panckage and 2 others like this.
  2. Keela Too

    Keela Too Sally Burch

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    N.Ireland
    It would be great to get multiple demonstrations going on in the UK. Here in Belfast we are hoping to have something happening. :)
     
    mango, JaimeS, AndyPR and 1 other person like this.
  3. AndyPR

    AndyPR RIP PR :'(

    Post from another thread.

     
    Sasha likes this.
  4. AndyPR

    AndyPR RIP PR :'(

  5. AndyPR

    AndyPR RIP PR :'(

    Action for ME have stated their support for the Millions Missing events at the end of this month
    https://www.facebook.com/actionforme/posts/10154464073138209

    It would be nice if all the UK charities were to do the same, or similar, notice of support, even if they weren't intending to attend any event. In particular, as a paid up member of the ME Association, I'd like to see more support from them, particularly on Facebook - they only did coverage after the event earlier this year and have refused to share more so far in order to stop the MEA Facebook page becoming "a carbon copy of one of their (MEActions) Facebook pages". o_O
     
    Silencio likes this.
  6. Cinders66

    Cinders66 Senior Member

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    What patients demands does AFME support?
    Are uk me action protests going to call for more uk MRC nihr funds like USA central demand is for nih funding, or it was last time.
     
  7. AndyPR

    AndyPR RIP PR :'(

    MEAction UK demands here
    #MillionsMissing UK Protest Demands - Survey

    One of the MEAction demands is the release of the PACE data, AfME released a letter supporting this early in the year. I have seen no other indication that they explicitly support any other of the demands, though by supporting the event I would say they are implicitly supporting the MEAction demands.
     
  8. Cinders66

    Cinders66 Senior Member

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    ^
    Who decided which demands went on that survey? Was there a reason why as someone else asked, there were just five questions peoplewere asked to respond to which rather led the direction ...

    There no call for increased or RFA funding , despite that being the main call of USA protests

    My concern is if AfME actually think it's fit for them to attend , it isn't necessarily going to be applying the radical pressure on areas I'm concerned with primarily which are research funding, education and provision for the severely ill
     
  9. AndyPR

    AndyPR RIP PR :'(

    http://www.meassociation.org.uk/201...-on-the-27th-of-this-month-11-september-2016/

    Also has been posted to their Facebook page, www.facebook.com/ME-Association-171411469583186/
     

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