Today we’re delighted to launch Sequence ME & Long Covid - the world’s largest long-read, whole-genome study of any disease 🔬 🧬 This £20 million ground breaking initiative will explore the root causes of ME and Long Covid, with the aim of accelerating progress towards diagnostics and treatments.

One week left to apply to take part in the Great North Run for Action for ME! Taking place on 13th September, the Great North Run is an epic half marathon with around 60,000 participants. Find out more on our website: www.actionforme.org.uk/great-north-...

We're delighted to welcome @tommorrisonmp.bsky.social to our Parliamentary Champions network! Tom will also be joining the APPG on ME. We would like to thank Tom for his dedication to supporting people with ME and we look forward to working with him. Read more www.actionforme.org.uk/campaign/par...

Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.

This week is #ChildrensMentalHealthWeek with Place2Be. 1 in 5 children face mental health challenges. We support children & young people with ME with our FREE Young People’s Counselling & Young People’s Community. More info 👇 www.actionforme.org.uk/18-and-under...

This week we’re supporting #ChildrensMentalHealthWeek with Place2Be. We’re here to support children & young people with ME through our FREE Young People’s Counselling & Young People’s Community. More info 👇 www.actionforme.org.uk/18-and-under...

Partners across the Overlapping Illness Alliance (OIA) recently came together in person to reflect on our shared priorities, review recent advocacy activity and agree next steps for our collaborative work. We'll share more as it develops! Learn about the OIA: www.overlappingillnessalliance.org.uk

This week is #ChildrensMentalHealthWeek with Place2Be. We’re here to support children & young people with ME through our FREE Young People’s Counselling & Young People’s Community. More info 👇 www.actionforme.org.uk/18-and-under...

1/3 Now published: We performed a large-scale replication testing the effect of serum from 67 pwME and 53 healthy donors on muscle cell mitochondria, revealing no significant differences. This suggests earlier results may not be true for people with ME in general. doi.org/10.1371/jour...

Thank you so much to over 5,000 of you who took part in our Big Survey! 🙌 We're so grateful for the time and energy you gave us in sharing your experiences, and providing insight into life with ME 🧡

📣The recording from the PRIME webinar is now available! Our apologies, due to a technical error, the captions file wasn't saved and we don't have capacity to generate them ourselves given the webinar's length. 🔗 Watch the recording on our YouTube: www.youtube.com/watch?v=1sVb...

We're delighted to welcome Lee Barron MP to our Parliamentary Champions network! 🤝 We would like to thank Lee for his dedication to supporting people with ME and we look forward to working with him. Read more about our Parliamentary Champions network: www.actionforme.org.uk/campaign/par...

1/4 📢 APPG on ME announcement As many of you will already be aware, @tessamunt.bsky.social MP has officially been appointed Chair of the APPG on ME, following the group’s Annual General Meeting last week 🤝 #APPG #MyalgicEncephalomyelitis ⬇️

💻 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/

⌛ The Big Survey closes tomorrow! Your responses directly shape our work and help us to illustrate the impact of ME. If you're thinking about taking part, please do. 🔗 Take part today: www.actionforme.org.uk/research-cam...

Up to 1.35 million people in the UK are living with ME or ME-like symptoms. 1 in 4 are so severely affected that they are house or bedbound. Many people living with ME face serious stigma and isolation. Swipe through the images to learn more about ME and help change this.

🚨 One week left to contribute to ME research and fill in our 2025/26 Big Survey! If you've got ME or ME-like symptoms as part of long Covid, we want to hear from you 🙏 🔗 Take part, and find out more: www.actionforme.org.uk/research-cam... Thank you!

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...

📢 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...

The Department for Transport is consulting on updates to regulations for powered mobility devices like electric wheelchairs & scooters. Share your views by Mar 31, 2026. Have your say here 👇 www.gov.uk/government/c...

There's still time to sign up for our first PRIME research project online workshop! 📆 Wed 21 Jan 2026 2pm-5pm. PRIME is an initiative designed to strengthen & accelerate research into ME/CFS. Read the full event programme & register for the event 👇 www.actionforme.org.uk/prime-resear...

📢 Action for ME CEO, Sonya Chowdhury, speaks to LBC. You can read the full article here 👇 www.lbc.co.uk/article/trea...

📢 Have your say in the conversation about the SEND reform! Ahead of the publication of the Schools White Paper this year, the Dept for Education is hosting a series of SEND engagement events across the country. These events are for parents & carers, alongside teachers & other education experts.

✨ Thank you for being part of our 2025 ✨ This year, thousands of people engaged with our content about the reality of ME - from lived experience stories to the DecodeME results and vital policy work. Thank you for supporting us and helping make ME visible 🧡

⭐ We’re excited to share the runners-up to our Medical Student Essay Competition! In fourth place is Mohammed, who is studying at the Uni of Leeds! Read Eesa’s brilliant essay here👇 www.actionforme.org.uk/supporting-y... Huge thank you to all the students who took part!

⭐ We’re excited to share the runners-up to our Medical Student Essay Competition! In third place is Eesa, who is studying at Queen Mary Uni of London! Read Eesa’s brilliant essay here👇 www.actionforme.org.uk/supporting-y... Huge thank you to all the students who took part!

⭐ We’re excited to share the runners-up to our Medical Student Essay Competition! In second place is Elinor, who is studying at the Uni of Leicester! Read Elinor’s brilliant essay here👇 www.actionforme.org.uk/supporting-y... Huge thank you to all the students who took part!

We will be closed from 4pm Fri 19 Dec – 9am Mon 5 Jan. Our Info & Support service reopens to new enquiries at midday Tues 6 Jan. We know the festive period can be challenging for many people with ME. There are helplines available over Christmas (pictured). We wish you a wonderful festive break 🧡

🫶 If you’re 11–18 and living with ME, you don’t have to face it alone. Our Young People’s Counselling service offers up to 12 online sessions for free, with trained counsellors who understand ME and the impact it can have. ⁠Get in touch through our website: www.actionforme.org.uk/18-and-under...

Our Information & Support team will be taking a break over Christmas.   They'll be closed from 3pm Tues 16 Dec to midday Tues 6 Jan.   If you require support over the festive period, you can visit our website or contact the other helplines detailed in the image.   We wish you a restful Christmas 🧡

We’re delighted to welcome @llinosmedi.bsky.social to our Parliamentary Champions network! 🤝 Llinos met with us recently to discuss how she can further support the ME community, having experienced the devastating impact of #MECFS through her constituency work and APPG on ME. ⬇️ #MyalgicE

This #FundraisingFriday we want to wish good luck to our fabulous fundraisers & all other participants taking part in the Victoria Park Half Marathon this Saturday! Want to help us change the lives of people with ME? Fundraise for us! 👇 www.actionforme.org.uk/support-us/f...

📢 Welsh Senedd passes Motion 8884!🧡 Pleased to see the Senedd vote in favour of Adam Price MS motion, bringing vital attention to severe & very severe ME and the urgent need for drastically better care, support & research. #pwME #Senedd

Recording from the LOCOME Project webinar now available! The webinar took place on Dec 5 & shared the projects final findings & discussed the next steps. Learn more about these findings, alongside discussions from the panel by watching the recording on our YouTube channel 👇 youtu.be/ITZ3LzZ0NAA

We are delighted to announce the first online workshop of the PRIME research project!   📆 Wed 21 Jan 2026 2pm-5pm.   PRIME is an initiative designed to strengthen & accelerate research into ME/CFS.   Read the full event programme & register for the event 👇 www.actionforme.org.uk/prime-resear... 

🥳 We are absolutely blown away by your support during our Big Give week. From all of us at Action for ME, thank you for helping us surpass our Christmas campaign target, and raise an online total of £185,877. ✨ The Big Give campaign is now finished, and we’ll be sharing our full total soon.

Last year, our free Information & Support service received over 1,700 enquiries from people with ME. This vital service exists because of the generosity of our community. Donate today & help us continue to provide tailored advice & practical resources to people like Nic 👇 bit.ly/2025-big-give  

⏰ 24 hours left! Together, you’ve helped raise over £135,000 to improve the lives of people with ME and accelerate vital research. Although our match funds have now run out, every single donation still counts. ✨ Donate here: bit.ly/2025-big-give  Thank you so much 🧡

Jo’s poem is a reminder of the hope that research brings - and why we need to keep pushing forward.   There's still two days left of our Big Give campaign. Your donations will help us build on DecodeME's findings and bring hope for the future.   🧡 Donate here: bit.ly/2025-big-give   

Donations made during our last Big Give campaign enabled us to provide over 120 bursaries to people like Nic, who has accessed our Chaplaincy support service. ✨ Donate today and help us continue to support the spiritual, emotional and physical needs to people with ME. bit.ly/2025-big-give

“The advice and support I was given once again lifted me out of a state of desperation and I don’t say that lightly.”  Donate to our Big Give campaign today, and help us continue to help people like Beena access the support they need: bit.ly/2025-big-give 

Thank you for all the support to our Big Give #ChristmasChallenge – so far we have raised over £118,000!⭐ We are so grateful for your support and incredible generosity – every donation means a lot to us and will enable us to continue to support people affected by ME of all ages.

Stanley* is a Patient & Public Involvement(PPI) contributor to Action for ME research projects, including LOCOME and our Big Survey. By donating to our Big Give, you can help us drive groundbreaking research forward: bit.ly/2025-big-give  *Name has been changed.  

🔎 From #DecodeME to LOCOME, it's been a landmark year for ME research. Hear why this is a pivotal moment for #MECFS research - and how Action for ME is accelerating understanding for everyone affected. 🧬 Donate today and your gift will be DOUBLED: bit.ly/2025-big-give #ChristmasChallenge

WEBINAR TODAY: Our researchers are unpacking the new ME genetics study today - join the live webinar to hear the findings first-hand and get your questions answered. 📅 Today 🕑 2PM GMT 🔗 Register: us02web.zoom.us/webinar/regi... #pwME #MECFS #longCOVID #MissingMillions

Congratulations to Kieran Gharti, winner of the @actionforme.bsky.social 2025 Medical Student Essay Competition! Kieran, a third-year MBChB Medicine student at @UoMMedicine, highlighted the urgent need for more research into ME/CFS in his winning essay.

Money raised during last year’s Big Give helped us provide 121 bursaries for healthcare to people like Lulu, enabling them to access ME-informed health and wellbeing support.    ✨You can donate to our Big Give campaign today, and have your donation doubled! bit.ly/2025-big-give 

Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to -replicate #MEcfs genetic signal & -show its shared/distinct genetics with Long Covid. Next: replicate ME/CFS subtypes w/ targeted therapies www.medrxiv.org/content/10.6...

We’re excited to announce the winner of our Medical Student Essay competition is Kieran Gharti, who is in his third year of MBChB Medicine degree at the University of Manchester.

(1/4) 🧬 @precisionlife.bsky.social has released exciting results from the LOCOME project Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME.