Action for ME @actionforme
This account is no longer actively managed. actionforme.org.uk Bristol Joined April 2009-
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@cfs_jo @rachelleese84 Thanks Jo - we are aware of the growing community on BlueSky, particularly in recent days/weeks, & will be looking at it as an option too. Josh
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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-use-o… #pwME #MECFS #MyalgicE
@rachelleese84 Each platform has different audiences & uses - we're aware of that & this will be factored in when deciding on our content & aims for each platform
@rachelleese84 All of the above will enable us to reach more people & raise more awareness of ME than we do currently, alongside adding more transparency to our work. I hope this reassures you a little. Thanks, Josh
@rachelleese84 Hi Rachel. We appreciate this news will feel disappointing to some & the decision has been made to enable us to use our time and resource in other ways, such as re-launching our newsletter, providing monthly updates on our work & accessing audiences on platforms we're yet to use
@Jamie___e Good spot, thanks Jamie! All updated
@dannyjred Thank you so much again for your incredible support, Danny! We hope you managed to enjoy your birthday as much as you were able to and sending birthday wishes from the whole of the Action for ME team 🧡
Thanks so much for all your support @dannyjred
🚨 Recording available The recording from our 2024 AGM is now available 👇 actionforme.org.uk/news/watch-our… Also available on our YouTube channel 📹 Thank you to all who attended & submitted questions – we really hope the session useful & informative #pwme #MECFS #MyalgicE
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 🤝
🚨 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/genetics-… Thanks to everyone who attended and helped make this happen! #MECFS #MyalgicE #pwME #MEResearch
@_Lucibee No problem at all. We do keep archives and are required by law to hold certain documents etc. over specified time periods, but not of everything I’m afraid
@arisonsned @TomKindlon @CGATist @CardingLab Hi @arisonsned - I have just returned from annual leave and will be uploading the recordings tomorrow. Thanks, Josh
@KatyBruce108 @MEAssociation Hi @KatyBruce108 we will raise this with ForwardME as our policy agenda is already full currently & we need to prioritise the APPG, thanks.
@gardeninglou @MEAssociation @SonyaChowdhury We currently have 2 officers; we need 2 more (one needs to be Conservative). We’re still collating responses re membership and have at least half of the 20 members needed. More emails are going out today and we're happy to follow-up with your MP if you let us know. Thanks
@_Lucibee No, sorry we don't have this.
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-…
Action for ME retweeted
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.
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/02h2VI…
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