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Bristol
Joined April 2009
1/5 We've updated our 'Manifesto for ME' - now 'Act For ME' We've sent the updated doc to all MPs, asking them to #ActForME & pledge support for our 3 key calls (see thread below) We've also created a template letter for you to send to your local MP, asking for their support
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🚨 Organisational statement We have provided a statement on our use of the platform 'X', which is available to read on our website 👇 actionforme.org.uk/news/our-… #pwME #MECFS #MyalgicE
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Thanks so much for all your support @dannyjred
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🚨 Recording available The recording from our 2024 AGM is now available 👇 actionforme.org.uk/news/watc… Also available on our YouTube channel 📹 Thank you to all who attended & submitted questions – we really hope the session useful & informative #pwme #MECFS #MyalgicE
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We’re delighted to announce @JoPlattLeigh MP as the newest member of our Parliamentary Champions network! 🎉 We’d like to thank Jo for her commitment to support #pwME & #longCovid & we very much look forward to working with her 🤝
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🚨 Recording available The recording from our Genetics Centre of Excellence webinar is now available to view (also available on our YouTube channel) 👇 actionforme.org.uk/news/gene… Thanks to everyone who attended and helped make this happen! #MECFS #MyalgicE #pwME #MEResearch
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Together, with over 60 organisations, we signed Turn2Us' open letter to the Chancellor ahead of the budget announcement today, calling for a more compassionate and just narrative around those receiving the social security that they are entitled to 👇 turn2us.org.uk/about-us/news…
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Today we've sent a #ThereForME letter, co-signed by 28 organisations and smaller initiatives, to @LaylaMoran @CommonsHealth The letter points to inadequacies, present and historic, in care for people with ME and Long Covid, and calls on the committee to undertake an inquiry.
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Action for ME retweeted
If you can, please listen to today’s episode of #thestory. It’s a tough listen, but it’s important. We’re immensely grateful to Sean @TimesONeill for taking the time to tell @ManveenRana about the heartbreaking story of Maeve, his daughter. 🎧👇
“My daughter died of ME. I had to fight the NHS for answers.” On The Story today, how Maeve Boothby-O’Neill’s death from myalgic encephalomyelitis could change the NHS. With @TimesONeill and @ManveenRana ⬇️ open.spotify.com/episode/02h…
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