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actionforme.bsky.social
Providing support & holistic healthcare services to people of all ages affected by #MECFS
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🎙 Learn about Severe ME is the latest podcast in our Learn about ME project funded by the Scottish Government. Many GPs are still unaware of the risks of severe & very severe ME, of how disabling & isolating it can be & what they can do to support people.

submitted 1 day ago • 1 comment

The Department of Health and Social Care has released the following statement on the Delivery Plan on ME/CFS 👇 questions-statements.parliament.uk/written-ques... The statement outlines the departments plans to publish the Plan by the end of June.

submitted 2 days ago • 1 comment

📢 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 5 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 🎉 Our previous website was outdated & wasn’t as accessible as it could be, making it harder to find resources, raise awareness & support more people affected by #MECFS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 7 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 8 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 8 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 15 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 25 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 22 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 23 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 26 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 33 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 36 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 38 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 40 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 42 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 42 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 43 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 44 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 44 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 49 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 51 days ago • 1 comment