Graphic from Action for ME promoting their Family Support Service. Top half includes a photo of a mother and young daughter sat talking. Bottom half includes a quote from a Family Support service user details how helpful the service is.

Graphic from Action for ME promoting their Family Support service. Text includes details of the two support options: accessing education in a needs-appropriate way and working with professionals. Text ‘we are here for parents or carers of children & young people with ME’ along bottom.

Our Family Support service is here for parents or carers of children with diagnosed or suspected ME.


We support families to access education & work with professionals, such as their child’s GP.


For more info👇

www.actionforme.org.uk/supporting-y...

BBC Lifeline Appeal Save the date! We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding...

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Huge thanks to everyone who helped bring this appeal to life. Please watch and share to raise awareness and understanding 🧡

Read more about Andrea, Alice & Isla, and Mark here 👇

www.actionforme.org.uk/support-us/b...

#pwME #BBCLifeline

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All funds raised will support our work to improve lives affected by ME - providing information, support and healthcare now, and investing in research for the future.

#BBCLifeline

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Through this appeal, we hope to reach those unfamiliar with life with ME, combat stigma, and raise vital funds.

You can donate via the BBC from Monday 20 April - details on our Lifeline page.

#MyalgicEncephalomyelitis

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These stories will air on BBC One on Sunday 26 April at 2.50pm.

The video will also be available on the BBC website until Saturday 16 May.

#MyalgicE

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Since February, we have been working with the BBC to develop a 9-minute video, featuring the real-life stories of people with ME: Andrea, Alice & Isla, and Mark. ⬇️

#MECFS

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Poster showing a video camera on a tripod with text “BBC Lifeline Appeal – Airing Sunday 26 April.” The Action for ME logo appears in the top right, and a Lifeline logo with two reaching hands is at the bottom.

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🚨 ME on the BBC

We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV!

#pwME

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Text reads: Reminder: Register for our PRIME workshop. Join our second online workshop to learn more about the similarities and distinctions between Long Covid and ME/CFS. Friday 24 April, 2-5pm.

There's still time to sign up for our second workshop for our PRIME research project!

📅 When? Friday 24 April, 2-5pm GMT
📍 Online

🔗 Register to attend: us02web.zoom.us/webinar/regi...
👉 Read the full programme: www.actionforme.org.uk/prime-worksh...

Graphic from Action for ME promoting the ME Friends Online Forum, open to adults in the UK living with ME. Photo in bottom half shows a man using a tablet, with a QR code to the forum sign up page in right corner. Text in top half details the forums support. Action for ME logo in top right corner. 

💻 Join our ME Friends Online forum!

Open to adults in the UK living with ME, our forum offers peer support, friendly discussions & an opportunity to connect with others who truly understand.

Sign up & read the Terms of Use here 👇

www.actionforme.org.uk/sign-up/

Initial results from the Big Survey of >5000 pwME are deeply disturbing… disbelief by NHS healthcare professionals, made to feel their ME was their fault, traumatic encounters with clinicians.

This can not continue.

More on 11 May👇🏽.

Thanks @kacheston.bsky.social and @actionforme.bsky.social.

📢 Easter office closure

We’re closed over the Easter Bank Holiday weekend from 3pm, Thursday 2 April to 10am, Tuesday 7 April. The Information and Support line will be closed until 10:30am Wednesday 8 April.

From all of us here at Action for ME, we wish you a restful Easter break 🧡

There's still time to sign up for our second workshop for our PRIME research project!

📅 When? Friday 24 April, 2-5pm GMT
📍 Online

🔗 Register to attend: us02web.zoom.us/webinar/regi...

New study finds age peaks in ME onset New research funded by Action for ME explores when ME develops, identifying two peak onset periods and links to triggers and severity.

This large-scale study analysed data from more than 9,000 people with ME/CFS, helping to build a clearer picture of the condition’s onset, potential triggers, and links to illness severity.
Find out more here: www.actionforme.org.uk/me-onset-pat...

📢 New study finds age peaks in ME onset

We are pleased to have funded new research from Dr Audrey Ryback at the University of Edinburgh, co-produced with Simon McGrath, exploring patterns in how and when myalgic encephalomyelitis (ME) develops.(cont.)

Graphic from Action for ME promoting their Family Support Service. Top half includes a photo of a mother and young daughter sat talking. Bottom half includes a quote from a Family Support service user details how helpful the service is.

Graphic from Action for ME promoting their Family Support service. Text includes details of the two support options: accessing education in a needs-appropriate way and working with professionals. Text ‘we are here for parents or carers of children & young people with ME’ along bottom.

Our Family Support service is here for parents or carers of children with diagnosed or suspected ME.

We support families to access education & work with professionals, such as their child’s GP.

More info👇

www.actionforme.org.uk/supporting-y...

Hi @michelleb4.bsky.social. We were contacted by the Department for Education to input into the reforms ahead of the main consultation. We will be submitting a wider organisational response as part of the current consultation phase. Best wishes, Lauren

We’ve heard some early feedback that this is a positive improvement on previous versions. We are currently reviewing the updated module in detail and will continue to share any feedback or concerns.
🔗 Access the module here: learninghub.nhs.uk/Resource/793...

The module appears to be publicly accessible, although you’ll need to create an account to log in and view it. We are aware that it is not the most straightforward system, but we are pleased to see that access to the module hasn't been restricted. (2/3)

📢 Updated NHS learning module on severe ME/CFS now available

The NHS has launched an updated version of its third online learning module: Supporting people with severe ME/CFS.

This new version has been developed in response to feedback and aims to better support patient care and safety. (1/3)

Welcome! You are invited to join a webinar: PRIME Workshop - The Similarities and Distinctions between Long Covid & ME/CFS. After registering, you will receive a confirmation email about joining the w... Welcome! You are invited to join a webinar: PRIME Workshop - The Similarities and Distinctions between Long Covid & ME/CFS. After registering, you will receive a confirmation email about joining the w...

📅 Friday 24 April 

⏰ 2-5pm GMT 

📍 Online 

Register to attend: us02web.zoom.us/webinar/regi...   (3/3)

Hear from experts including Professor Danny Altmann (Imperial College London), Dr Amy Proal (PolyBio Research Foundation), Professor Manoj Sivan (University of Leeds), Professor Nisreen Alwan (University of Southampton) and Dr Andy Malinowski (PrecisionLife) (2/3)

❓Long Covid and ME/CFS share many symptoms, but do they share the same biology? 

Join our second PRIME Workshop to explore the similarities and distinctions between these two complex conditions (1/3)

Graphic from the Neurological Alliance of Scotland for Brain Awareness Week. Text on purple background ‘Don’t assume I’m ok’ with text beneath on white background ‘1 in 6 people live with a neurological condition’. Logos of alliance members along the bottom.

This week is Brain Awareness Week!

The campaign #DontAssumeImOk urgers those supporting children & young people with neurological conditions to understand & support them.

Find out how our support services can help children & young people with ME 👇

www.actionforme.org.uk/18-and-under/

Graphic highlights Long Covid Awareness Day. Text reads 'Did you know that Long Covid can cause heart amd chest symptoms?' with image of a heartbeat.

Today is International #LongCovidAwarenessDay 2026 🧡
We're standing with everyone affected by Long Covid and the organisations also working to support them 🤝

#LongCovidHeartbeats

Graphic promoting an Action for ME self‑advocacy resource titled “Impact Statement Template”. The image highlights how the template helps people with ME explain how the condition affects them and what adjustments would support them. Action for ME logo in top right.

📢 New self‑advocacy resource now available: Impact Statement Template.

Developed with our Adults Advocacy Service, it helps people with ME communicate how ME affects them and what support they need.

Download here 👇

www.actionforme.org.uk/resource/imp...

Graphic shows image of a scientist with text: ME Research Seminar, from rare cancers to ME and long Covid: a new model for research in neglected disease. Join us and share your views on a proposed new research project. Thursday 26 March, 17:00-18:00

🔬 Join us for a seminar hosted by Action for ME and Consilium Scientific exploring a new international initiative that could break the cycle of neglect in ME research:

📅 26th March, 5pm GMT
📍 Online

🔗 Sign up here: mailchi.mp/consilium-sc...

“I look forward to working with Action for ME and colleagues across Parliament to help ensure that its commitments are delivered fully and in a timely manner.”

Thanks to Greg for his commitment to the ME community and for already tabling written questions on severe and very severe ME 🙏

#MyalgicE

“to ensure the UK keeps pace with developments internationally.

The Delivery Plan published last year represents a step forward, but its impact will depend on effective implementation...

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“However, at a time when biomedical and genetic research is opening up new avenues of understanding, it is important that the UK actively contributes and maintains ambition in this field.

Building research capacity and encouraging collaboration across institutions will be essential...

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“I am pleased to become a Parliamentary Champion for Action for ME and to support efforts to strengthen the UK’s response to this complex and often misunderstood illness.

The UK has a strong reputation for medical research and innovation...

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#MyalgicEncephalomyelitis