Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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#MEAction:Troubled by NICE guidelines? Three easy ways you can help

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Jul 13, 2017.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    The three ways they suggest are;
    1. Sign the ME Association’s Petition
    2. Join the #NICEisnotnicetoME Social Media Campaign
    3. a Personalised Letter to Your MP in 5 Minutes.
    Details on all options at link - http://www.meaction.net/2017/07/12/troubled-by-nice-guidelines-three-easy-ways-you-can-help/
     
  2. emsho

    emsho

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    Scotland
    @AndyPR thanks for sharing. I've been allowed to take over the MEActionUk twitter for a week to promote the #NICEisnotnicetoME campaign. The idea is that if you've been harmed by GET you share your picture @NICE and use the #NICEisnotnicetoME.

    Charities are all submitting official responses, there's the ME association petition and draft letter to send to your MP. The social media campaign is to put faces to the harms of GET and get some awareness. Tanya (the woman who came up with the #NICEisnotnicetoME) and I have both been harmed by GET so this is something close to our hearts. If you've been harmed by GET and are happy to share your photo or story on twitter/instagram will you message it to me? Also please share/re-tweet if you have twitter (does someone here run the Phoenix Rising one?)
     
  3. AndyPR

    AndyPR Cookies for Tired Sam

    @Kina , I think, is one of the guardians of the PR social media. :)
     
    mango and Valentijn like this.
  4. Kina

    Kina Admin Support Staff

    Messages:
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    Ontario, Canada
    I am indeed.

    @emsho Start a Conversation with me to let me know how we can help.
     
  5. Abha

    Abha Abha

    Messages:
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    UK
    Hi Andy,

    I have just written a lengthy reply to my local MLA(in NI) re this topic.I'm a senior citizen now. Back in the 1980s here there was some hope for ME/CFS but that has all faded away!A clinic was set up then but as far as I know that no longer exists and few GPs/consultants are interested in such a topic.Hopefully this action will bear some fruit!
     
    Last edited: Jul 16, 2017
    mango, emsho, Barry53 and 1 other person like this.
  6. AndyPR

    AndyPR Cookies for Tired Sam

    @emsho , in case this is useful, this is something I worked out for the campaign to write letters to prospective MPs before the recent General Election.
    Using this, people can work out the prevalence and economic burden of ME in their constituency.
     
    SamanthaJ and emsho like this.

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