2021 UK: ME Association - NICE and the unpublished ME/CFS guideline - contact your MP

Discussion in 'Advocacy Action Alerts' started by JoanneS, Aug 24, 2021.

  1. JoanneS

    JoanneS Established Member (Voting Rights)

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    Last edited by a moderator: Aug 25, 2021
    ahimsa, JaneL, Binkie4 and 14 others like this.
  2. MeSci

    MeSci Senior Member (Voting Rights)

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    Cornwall, UK
    I have sent a slightly-altered version to my MP Scott Mann.
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Binkie4, meg22, Daisy and 11 others like this.
  4. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Have adapted template to write to Anneliese Dodds
     
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  5. meg22

    meg22 Senior Member (Voting Rights)

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    Sheffield UK
    I emailed my MP, Clive Betts, on Sunday before the template letter appeared so have had to email him again to ask him to support the APPG letter. I've had a reply back to say that he will add his name to that and is also doing his own letter to NICE.

    He had been previously supportive, which made it easier, as he wrote to the then Chief Exec of NICE, Sir Andrew Dillon and Seema Kennedy MP in 2019 to try and get GET & CBT suspended whilst the guideline review was taking place.
     
  6. Jacob Richter

    Jacob Richter Established Member (Voting Rights)

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  7. Jacob Richter

    Jacob Richter Established Member (Voting Rights)

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    Just to encourage others who may be considering sending their own version of the ME Association template letter to their MP (or asking family and friends to do so), I have received written confirmation today from my MP that he has made representations to NICE on my behalf. I also intend to meet my MP, who attends cabinet, in person next week to keep up the momentum.

    Other forms of advocacy and awareness raising will be equally important, but I'm pleased - surprised, even - that this route has yielded useful and quick results.
     
  8. Jacob Richter

    Jacob Richter Established Member (Voting Rights)

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    Apologies for the further message but I wanted to suggest that those with the energy and inclination could - in addition to emailing their MP - also ask family members and close friends who live in different constituencies to send a similar version of the email to their MPs. This way one person's efforts could lead to multiple MPs being contacted, a multiplier effect.
     
  9. Sbag

    Sbag Senior Member (Voting Rights)

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    Sent mine to Andrea Leadsom
     
    MEMarge, meg22, MeSci and 2 others like this.

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