1/3 More than 145 students have entered our Medical Student Essay Competition! Thank you to all who took the time and energy to submit an essay on the topic of “What’s your most important learning point about ME?” One entrant said:

📢 Exciting news! Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.

Our Christmas Angels project is back! 😇 Now in its 15th year, our heartwarming Christmas Angels project enables people with ME to send Christmas cards to each other via the Action for ME office. We know how valuable this project is for people with ME. Past participants have said:

✨ It’s #TrusteesWeek and we’re proud to recognise the commitment, insight and expertise of our trustees. 🔦 Today, we’re shining a light on our newest trustees: Ros, Wendy, and Colin. Thank you to all our trustees for everything you do to drive our work forward🙏 Read more: tinyurl.com/32mm2ppw

The British Psychological Society Good Practice Guidelines for Psychologists Working with pPeople with ME/CFS have been updated this month. The guidelines are to support people with the psychological impact of living with a long-term, debilitating physical condition.

We recently launched our Big Survey! 🎉 We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡 Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/

We were delighted to share our poster on Public & Patient Involvement (PPI) in DecodeME at Voluntary Health Scotland’s Annual Conference Avril, our Projects & Participation Senior Practitioner, highlighted the impact, successes & learnings from PPI 🔎 #pwME #MECFS

1/3 📢 Ask your MP to Act for ME 💷 Sufficiently fund a co-designed, very severe ME specialist service ✅ Ensure the full implementation of the DHSC public awareness campaign 🔬 Adopt a strategic approach to ME research #pwME #MECFS

1/2 📢 APPG on ME update Unfortunately, the APPG's severe ME inquiry evidence session, didn't go ahead due to a limited number of MPs being in Parliament that day. ⬇️ #pwME #MECFS

At Lib Dem Conference last month, I met with Scope, MS Society, Action for ME, and Parkinson's UK to discuss the urgent need to reform PIP assessments and the impact on those with overlapping and invisible disabilities.

Did you know we offer free counselling to young people aged 11 - 18? Living with ME can be tough, but you don't have to face it alone 🧡 👉 Learn more: www.actionforme.org.uk/18-and-under/support-for-under-18/yp-counselling/

Could you be an angel this Christmas? 😇 Join Action for ME’s Christmas Angels project, back for its 15th year! 💌 Send or receive a thoughtful card from someone else with ME – all it takes is a card and a stamp. Sign up now 👇 🔗 forms.gle/VQ51jyCiKGYN...

Our medical student essay competition is back! We are hosting an essay competition open to all medical students at any Medical School in the UK. Students who take part will have an improved understanding of ME and, we hope, be better able to diagnose and support people with ME.

Wishing our incredible Great South Run team the very best of luck for today's event! 🎉🏃‍➡️ Thank you for fundraising to support our work and for helping to raise vital awareness of ME 🧡 Want to join next year's run? Register your interest: www.actionforme.org.uk/great-south-...

🤝 We've recently launched our PRIME research project in partnership with the University of Edinburgh. Thank you to David Tuller and Chris Ponting for helping raise awareness of the importance of PRIME and ME research more generally. Watch their interview here: www.youtube.com/watch?v=1dgKMO0tPBw

Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.   Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement.  1/4

The Big Survey is now live! It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.

🎉 We are delighted to launch this year’s Big Survey in collaboration with @actionforme.bsky.social! If you are in the UK living with ME or Long Covid with ME symptoms, we want to hear from you! tinyurl.com/2s4dbrkx 🧵

Our 2025 Big Survey is now open! 🎉 For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/ Thank you for supporting our research💙 🤝in collaboration with @durhamimh.bsky.social @kacheston.bsky.social

Our first Big Survey in over 5 years launches next week! You can sign up in advance to receive the survey once it's live, head to our web page to find out more: www.actionforme.org.uk/research-cam... 📅Opens 10am, Monday 13th October - 27th January 2026

1/2 We're excited to announce that we've joined as an affiliate charity partner of Our Future Health, the UK's largest health research programme! We'll support Our Future Health to ensure their programme serves the research needs of a range of health conditions & diseases, incl. ME #pwME #MECFS

1/3 🔬 Research news Researchers at the University of East Anglia say they have developed the world's first blood test to diagnose ME However, whilst acknowledging the research as an "interesting development", other researchers have offered cautionary responses to the results #pwME #MEResearch ⬇️

We are delighted to welcome @catsmithmp.bsky.social as our newest Parliamentary Champion! We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...

The recording from our 2025 AGM is now available to view on our YouTube channel! 🎬 youtu.be/N0mRuePXMgQ And, in case you missed it, you can also find a copy of our most recent Annual Report & Accounts in the 'Resources' section of our website. #pwME #MECF#pwMEa#MECFS##MyalgicEc#MyalgicEncephalomyelitis

📢 2 weeks left to sign up for the Bath Half in aid of Action for ME! Applications close on 12th October - don’t miss your spot at one of the UK’s most prestigious half marathons 👟 Find out more and apply for a place: GetPRO Bath Half Marathon - Action for ME

📢 Invite your MP to the next APPG on ME meeting! 📆 Thurs 23 Oct, 11am–1pm The session will follow the Severe ME Inquiry evidence session, with MPs drafting recommendations for a formal report. ✉️ Updated invite template via APPG site: appgme.co.uk/contact-your...

This #FundraisingFriday, we are celebrating the brilliant Iara De Sousa and her partner who walked the Ultra Challenge Thames Bridge Trek in aid of Action for ME, surpassing her fundraising goal to raise £690!

Good news! Learn about ME has been awarded £33,366 from the Scottish government to continue for another year. Read the full response to Alex Cole-Hamilton's question 👇 tinyurl.com/4f66ub79

📢 APPG on ME The minutes from the 10 September APPG meeting are now available on the APPG’s website 👇  appgme.co.uk/meetings/app... Thank you to those with lived experience who used their valuable time and energy to provide evidence as part of the Severe ME Inquiry 🧡 #pwME #MECFS #MyalgicE

We're pleased to share our 2024/25 Annual Report & Accounts! The document outlines the progress we've made against our strategy, alongside demonstrating the impact our work has for #pwME Available on our website 👇 www.actionforme.org.uk/resource/act... #MECFS #MyalgicE #MyalgicEncephalomyelitis

1/2 Just 1 week to go until our 2025 Annual General Meeting (AGM)! The Meeting will be held online (Zoom) & the recording will be shared soon after the meeting for those unable to attend. 📆 Wednesday 17 September 🕒 3pm - 4.15pm #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis ⬇️

Our ME Friends Online forum is a community for adults with ME, including carers, where you can connect with others who share your experiences. Sign-up here 👇 www.actionforme.org.uk/sign-up/ All users must abide by our Terms of Use! #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #PeerSupport

1/5 📢 Early Day Motion (EDM) tabled on the Final Delivery Plan We’re pleased to see this EDM tabled by @tommorrisonmp.bsky.social to discuss the Final Delivery Plan on ME/CFS. #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #EDM ⬇️

Wishing our amazing Great North Run team the best of luck this weekend! 🙌 From all of us here, we'd also like to thank them for their dedication to raising funds to support our work & raising much-needed awareness of #MECFS 🧡 #pwME #MyalgicE #MyalgicEncephalomyelitis #GreatNorthRun

📢🏴󠁧󠁢󠁷󠁬󠁳󠁿 If you live in Wales, contact your MSs, asking them to support Adam Price's motion for a severe/very severe ME debate in the Senedd! Details on how you can help below 👇 tinyurl.com/mxd3w28z @severemecymru.bsky.social #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

Following @decodemestudy.bsky.social's success, it's vitally important that the Government commits to strategic research funding & we'll continue our calls for a national research platform Thank you @johnmilnehorsham.bsky.social for leading on this call to the Secretary of State 🙏

1/2 📢 APPG on ME 📆 Wed 10 Sept | ⏰ 4pm The Group will open its enquiry into severe ME, hearing directly from people with lived experience. 👉 Ask your MP to attend: appgme.co.uk/contact-your... #SevereME #MECFS ⬇️

Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

Our FREE Adults Advocacy Service, available for adults with ME in the UK, is here to help you secure your rights & access the services you're entitled to There is currently no waiting list! More info & to self-refer 👇 www.actionforme.org.uk/supporting-y... #MECFS #Advocacy #DisabilityRights

Registration is now open for our 2025 AGM! A recording will be shared soon after the meeting for those unable to attend. 📆 Wednesday 17 September 🕒 3pm - 4.15pm More info & registration 👇 www.actionforme.org.uk/our-2025-agm/ #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

We know that living with ME can make it hard to maintain relationships with friends & family, leading to feelings of isolation & not being understood. Our ME Friends Online forum is a supportive community of people affected by ME who understand what it’s like to live with ME.

📢 Save the date for our Annual General Meeting (AGM)! Our AGM will be taking place on: Date 📆 Wednesday 17 September, 2025 Time 🕒 3.00pm-4.15pm Location 💻 online We will share the sign-up link in due course, as well as information on how to submit questions. #MECFS #MyalgicE #pwME

100% of clients were satisfied or very satisfied with our Advocacy Service. Our Advocates support you to have your say & know your rights. Advocacy is free, independent support to involve you in decisions about your health, care & wellbeing. More info 👇 www.actionforme.org.uk/supporting-y...

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM

Join our ME Friends Online forum today & connect with others who truly understand what it’s like living with ME.

For those living with severe ME, the isolation and loneliness can be devastating. As well as causing extreme pain, fatigue and sensory dysfunction, severe ME takes away a person's ability to work, study, socialise or even leave their house or bed.

Today is #SevereMEDay 💙 Around 1 in 4 people with ME are severely affected by the condition. They experience extreme physical, cognitive and sensory dysfunction that leaves them bed or housebound.

📢 New clinician resource guide for Severe and Very Severe ME. The World ME Alliance have launched a new publication, Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians. All too often, people with Severe and Very Severe ME are unable to access the care they need.

Today is #SevereMEDay. For too long, people with severe ME who are in hospital are often unable to access the appropriate care and support that they need.  They so often face misunderstanding and stigma from healthcare professionals, which has a devastating and dangerous impact on their lives.

The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research. A huge thanks to all our participants for giving their time, energy & DNA to the project. Learn more about our findings: shorturl.at/XOVJ1