Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

#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 Senior Member

    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 -
  2. emsho


    @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 Senior Member

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


    Sofa, UK
    I am indeed.

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

    Abha Abha

    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 Senior Member

    @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.

See more popular forum discussions.

Share This Page