Action for ME

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

@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

@actionforme @rachelleese84 I notice that most ME people I interact with are moving to BlueSky but you’re not on there. Think you’re missing a trick. TikTok might be popular but it’s not user friendly for the more severe end of ME. Too much moving pics/noise.

🚨 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

@actionforme Not really. Are you really going to raise awareness of serious issues (death / mistreatment/ lack of research) on TikTok? I’m not convinced

@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

@actionforme Do you mean 2025? 🙂🙂

@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

@actionforme Thanks for looking, Josh. I'm guessing the charity doesn't keep any kind of historical archives then?

Dr Anne MacIntyre's full documentary is available here: youtube.com/watch?v=lINkSt… It originally aired in July 1993. I hadn't realised that it shows Dr Durval Costa's SPECT study on abnormal brain blood flow in ME/CFS.

@_Lucibee Hi @_Lucibee - I've had a quick search around but haven't been able to find anything I'm afraid. Josh

@actionforme Do you know anyone who might have a copy?

@arisonsned @TomKindlon @CGATist @CardingLab Hi @arisonsned - I have just returned from annual leave and will be uploading the recordings tomorrow. Thanks, Josh

@TomKindlon @actionforme @CGATist @CardingLab @actionforme is there any news on when a recording of this will be available please?

UK Action for ME @actionforme Genetics Centre of Excellence webinar 24 October, from 2 to 3 pm hosted by AfME, speakers include Prof Chris Ponting @CGATist , Prof Simon Carding @CardingLab and Dr Audrey Ryback, plus Q&A session. actionforme.org.uk/news/genetics-… #MEcfs #PwME

@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.

We really need @MEAssociation & @actionforme to assess the impact of the changes to benefits which the government have announced in the budget & how they will impact #pwME & we need them to advocate strongly for us all where these changes will have a harmful impact on #pwME

@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.

I'm still trying to track down the report itself. Anyone? @actionforme - is it in your archives somewhere? x.com/_Lucibee/statu…

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-…

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.

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. 🎧👇