actionforme.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

📢 Health and disability Green Paper We understand & share the concerns & anxiety that the proposed changes within the Green Paper have caused. It is important to remember that even the proposals which are not being consulted on still require legislation to become law, meaning they may still change.

submitted 2 days ago • 1 comment

1/4 We’re delighted to announce the launch of our new website and ME Friends Online forum! 🎉 Our previous website was outdated & wasn’t as accessible as it could be, making it harder to find resources, raise awareness & support more people affected by #MECFS

submitted 4 days ago • 1 comment

Our website and ME Friends Online forum will be down for essential maintenance tomorrow morning. We expect disruption to last for between 1-3 hours, from 9am, and will let you know as soon as the site is back online. Apologies for the disruption and thank you for your patience 🧡

submitted 5 days ago • 0 comments

It's estimated that 2 million people & over 100,000 children are living with long Covid in the UK. Sign Long Covid Kids petition to the Department of Health & Social care, calling for investment into long Covid & ME research 👇 you.38degrees.org.uk/petitions/in... #LCandME #pwME #LongCovid

submitted 5 days ago • 0 comments

We are currently working through the Government's Welfare Green Paper and will be sharing information on how the proposed changes could affect people with ME and opportunities to engage with the consultation 👇

submitted 12 days ago • 1 comment

Great question from @JoPlatt.bsky.social Chair APPG ME on which I serve, highlighting how #ME disproportionately affects women. As we celebrate #InternationalWomensDay we’re looking to Dept Health Social Care for an ambitious and well funded Delivery Plan for ME. #ThereForME @actionforme.bsky.social

submitted 22 days ago • 3 comments

Minutes from last week's APPG meeting are now available 👇 appgme.co.uk/meetings/min... 📆 Next meeting: Weds 14 May The template letter on the APPG's website, to invite your local MP to attend the meeting, will be updated in due course. #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 19 days ago • 0 comments

If you're a parent/carer of a young person with ME, it can be a worrying time. They may be feeling isolated & frustrated. Our counsellors are here to help. Our FREE Young People's Counselling service is now open to those aged 11-18. Find out more 👇: www.actionforme.org.uk/18-and-under... #pwME

submitted 20 days ago • 0 comments

📢 Exciting update from our LOCOME partners, @precisionlife.bsky.social! Alongside opportunities for precision diagnostics, the findings provide a stronger understanding of the shared biology between long Covid and #MECFS Read the full press release 👇 #pwME #MyalgicEncephalomyelitis

submitted 23 days ago • 0 comments

Welcoming @tessamunt.bsky.social as our newest Parliamentary Champion! Tessa said: “I am delighted to join Action for ME’s Parliamentary Champions network. This cause is especially important to me as I have seen firsthand the devastating impact of ME amongst friends, colleagues & constituents.

submitted 30 days ago • 1 comment

We’re delighted to announce Paul Waugh MP as our latest Parliamentary Champion! 🤝 We would like to thank Paul for his commitment to support our work and people affected by ME 🧡 #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 33 days ago • 0 comments

James shared his story of living with #MECFS in the Sunday Times today. There’s now a fundraiser set up by his girlfriend to raise money for @actionforme.bsky.social Please share if you can! Article below - www.printfriendly.com/print?url=ht...

submitted 35 days ago • 0 comments

🎥 Today we’re launching our #FundThePlan campaign! With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it. We want to show them why it is important to #FundThePlan. Share a video on social media using our template ⬇️

submitted 37 days ago • 2 comments

Information and Support Line We are closing the line today and tomorrow to clear a backlog of enquiries. We will reopen with usual hours 10:30am next Wednesday (26th). Thank you for your understanding.

submitted 39 days ago • 0 comments

@thetimes.com - Plan to help ME sufferers will not include extra funding Quotes from our Chief Executive, Sonya, @karenlhargrave.bsky.social & her husband, James, @joplatt.bsky.social & @helenmorganlibdem.bsky.social #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 39 days ago • 3 comments

If you’re a parent/carer of a young person with ME, it can be a worrying & stressful time. Our free Young People’s Counselling service is here to help. Our counsellors understand what it's like to live with ME as a young person 🧡 Learn more here👇 www.actionforme.org.uk/18-and-under... #pwME

submitted 40 days ago • 0 comments

📢 APPG update 📆 Next meeting: Wed 5 March, 5 - 7pm Invite your local MP to attend! 👇 appgme.co.uk/contact-your... The meeting will focus on the upcoming Delivery Plan & the APPG's priorities for the year ahead. 💭 Have any suggested priorities? appgme.co.uk/contact-us/ #pwME #MECFS #MyalgicE

submitted 41 days ago • 1 comment

🎉 We're excited to announce that the #BlueSundayTeaPartyForME is back! Created by champion fundraiser Anna Redshaw, Blue Sunday helps raise vital funds for ME charities & breaks the isolation experienced by #pwME. 📅 Sunday 18 May! Read more about Blue Sunday 👇 bit.ly/AFME-Blue-Su... #MECFS

submitted 41 days ago • 0 comments

Earlier today, our Chief Exec, Sonya, met separately with @tessamunt.bsky.social & @paulwaughmp.bsky.social 🤝 They discussed: 📑 the Delivery Plan 🔬 the need for strategic research funding 🧡 how they can support #pwME Thank you both! #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 46 days ago • 0 comments

In March, our FREE Young People’s Counselling Service will be open to 11 & 12-year-olds! If you're a young person with ME or are a parent/carer of a young person with ME, scroll through the images to find out how we can help! Visit our website for info too 👇 www.actionforme.org.uk/18-and-under...

submitted 48 days ago • 1 comment

Following the sacking of the former-Health Minister, Andrew Gwynne, Ashley Dalton (MP for West Lancashire) has been appointed as the new Health Minister 👇 members.parliament.uk/member/4981/...

submitted 48 days ago • 1 comment

This week is #ChildrensMentalHealthWeek & we know that #LivingWithME can be hard. Starting in March we will be opening our FREE Young People’s Counselling service to 11 and 12-year-olds! Find out how our Young People’s Counselling Service can help 👇 www.actionforme.org.uk/18-and-under... #pwME

submitted 55 days ago • 0 comments

📢 Parliamentary question Alison Bennett MP asked the Secretary of State for Health and Social Care what steps have been taken to ensure adequate care for #pwME. Read Alison's question & the Minister's response below 👇 questions-statements.parliament.uk/written-ques... #MECFS #MyalgicE

submitted 55 days ago • 1 comment

We're delighted to announce Dame Harriet Baldwin as our latest Parliamentary Champion! 🤝 We would like to thank Dame Harriet for her commitment to supporting our work and people affected by ME 🧡 #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 58 days ago • 0 comments

Great to see Jo Platt MP ensuring #pwME & long Covid remain a priority for the Government's NHS reforms! Read Jo's topical question as part of last week's Health & Social Care oral questions & the Minister's response in the Hansard 👇 hansard.parliament.uk/commons/2025... #MECFS #MyalgicE

submitted 75 days ago • 0 comments

From all of us here at Action for ME, we wish you a wonderful and restful festive season! Thank you all so much for your support over the past year and we are looking forward to achieving even greater change for people affected by ME, in 2025 🧡 #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 100 days ago • 0 comments

Written evidence from the Work & Pensions Committee inquiry (safeguarding vulnerable claimants) is now available 👇 committees.parliament.uk/work/7866/sa... We were pleased to provide evidence, ensuring the experiences of #pwME were heard #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 100 days ago • 0 comments

More good news before the festive break 🎉 We're delighted to announce that we'll be opening our free Young People's Counselling service to include 11 & 12-year-olds, in the New Year! Find out more about how we can help 👇 www.actionforme.org.uk/18-and-under... #pwME #MECFS #MyalgicE #LivingWithME

submitted 100 days ago • 0 comments

Great to see this update from the APPG on ME - now formally reconstituted! Some promising suggestions raised: ✅ Pushing for a select committee inquiry - echoing our #ThereForME letter signed by 28 orgs ✅ APPG inquiry on severe ME ✅ Scrutiny of the ME delivery plan Minutes available here 👇

submitted 100 days ago • 1 comment

Early Xmas present 🎁 We're delighted to announce Max Wilkinson MP as our latest Parliamentary Champion! 🤝 Max met our Chief Exec following his local work with Cheltenham ME People to learn more about the challenges faced by #pwME & pledged his support Thank you, Max, for your commitment to pwME!

submitted 100 days ago • 0 comments

📢 APPG on ME update We're pleased to announce the APPG on ME is now formally registered & Jo Platt MP was unanimously confirmed as Chair by the Group! 🎉 Read the meeting summary & minutes 👇 appgme.co.uk/meetings/app... #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

submitted 100 days ago • 1 comment