Action for ME

Former Team GB sprinter Beth Dobbin, who is mostly housebound with severe ME, is calling for greater government investment in research. Together with ThereForME, we’ve produced a briefing supporting her campaign and setting out three priorities for government. #ME research #MECFS #ThereForME

😇 Our Christmas Angels project is back! This heartwarming project enables people with ME to send Christmas cards to each other via Action for ME. Register & find out more info here 👇 www.actionforme.org.uk/our-christma...

Our website is currently unavailable due to a widespread technical outage affecting websites and online services. We're sorry for any inconvenience. Our hosting provider is working to resolve the issue, and we'll share an update as soon as our website is back online. Thank you for your patience.

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...

📢 Reminder: register for the 4th PRIME webinar, exploring neurology in ME/CFS! 🗓️ Weds 28th Oct 🕑 2pm-5pm GMT 📍 Online via Zoom Join leading international researchers for an online workshop exploring neurology in ME/CFS. Register & read more 👇 www.actionforme.org.uk/register-for...

The inaugural PRIME International Symposium brought together researchers, clinicians, industry representatives, charities and people with lived experience for discussion, collaboration and learning focused on the future of ME research. Read our full roundup: www.actionforme.org.uk/global-exper...

New research! We’re working with National Energy Action on new research exploring experiences of home energy use, comfort and affordability among people living with ME or Long Covid. actionforme.org.uk/keeping-me-warm-take-part-in-new-research/ www.actionforme.org.uk/keeping-me-w...

😇 Our Christmas Angels project is back! This heartwarming project enables people with ME to send Christmas cards to each other via Action for ME. Register & find out more info here 👇 www.actionforme.org.uk/our-christma...

Register for the 4th PRIME webinar: The Neurology of ME/CFS 🗓️ Weds 28th Oct 🕑 2-5pm GMT 📍 Online via Zoom Join leading international researchers to explore neurology in ME/CFS & why it’s become an important area of research. Register & read more 👇 www.actionforme.org.uk/register-for...

🎥 The recording of our Annual General Meeting (AGM) 2026 is now available! Our AGM was on Tues 22 Sept & was led by our CEO, Sonya Chowdhury. Watch the recording on our YouTube channel 👇 youtu.be/8UmuX1SX9xE Our Annual Report 2025-2026 is also available 👇 www.actionforme.org.uk/resource/act...

Day 2 of the PRIME International Symposium! Today's programme focuses on current ME research and collaboration with people with lived experience. Sessions include the Research Involvement Hub, Big Survey findings and emerging research. actionforme.org.uk/prime #PRIMESymposium #MECFS #MyalgicE

The HERITAGE study is looking to recruit participants who have ME/CFS or long Covid who have not accessed an NHS specialist service within the last 2 years. Find out more 👇 heritage.leeds.ac.uk/join/ Please note, Action for ME is not involved in this study & sharing is not an endorsement.

Today marks the start of the PRIME International Symposium, bringing together researchers, industry and people with lived experience to explore ME research and build collaborations. www.actionforme.org.uk/register-for... #PRIMESymposium #MECFS #MyalgicE

A powerful piece from @georgemonbiot.bsky.social in The Guardian on the decades of neglect, dismissal and disbelief experienced by people with ME. Read the full article 👇 www.theguardian.com/commentisfre... www.theguardian.com/commentisfre...

We’ve provided a submission to the government for their Autumn Budget. We’re urging the HM Treasury to: 1) Fund implementation of a national framework for severe & very severe ME 2) Accelerate ME research & innovation Read more 👇 www.actionforme.org.uk/action-for-m...

We’ve issued a joint letter with the Overlapping Illness Alliance raising concerns about the Telegraph article ‘How having a disability became cool’ & how it portrays complex health conditions, chronic illness & disability. Read the full response: www.overlappingillnessalliance.org.uk/resources/

📢 New self‑advocacy resource now available: Impact Statement Template. Our new resource helps people with ME communicate how ME affects them and what support they need. Download here 👇 www.actionforme.org.uk/resource/imp...

😇 Our Christmas Angels project is back! This heartwarming project enables people with ME to send Christmas cards to each other via Action for ME. Register & find out more info here 👇 www.actionforme.org.uk/our-christma...

⏰ Our AGM is next week! Join us online on Tuesday 22nd Sept from 2pm–3pm to hear about Action for ME's work over the past year and our future priorities. There's still time to register: us02web.zoom.us/webinar/regi... #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

💻 Join our ME Friends Online forum & connect with others who truly understand life with ME. Enjoy peer support, friendly discussions & topics like TV, wildlife & more. Our forum is open to adults with ME in the UK. Sign up & read the Terms of Use 👇 www.actionforme.org.uk/sign-up/

We’re attending the NHS Scotland Event 2026 and ALLIANCE Connect networking next week to share Learn about ME free resources for healthcare professionals. More info: www.actionforme.org.uk/learn-about-... @alliancescot.bsky.social #LearnAboutME #NHSScotlandEvent #MyalgicE

Good luck to all our fantastic Action for ME runners taking on the #GreatNorthRun this Sunday! 🏃 Every pound raised helps us support people with ME, campaign for change and bolster research. Feeling inspired? Join our 2027 team 👇 www.actionforme.org.uk/great-north-... #Fundraising #MyalgicE

To continue to put on the pressure, I’ve tabled three new amendments for next week’s Report stage of the Health Bill. Each asks the government to have regard to the needs of persons with long-term, complex or fluctuating conditions - #pwME 👇🏽 Thanks to @actionforme.bsky.social for help with these.

The ME Local Network are holding their Annual Meeting via Zoom and everyone is welcome! 🗓️ Fri 4 Sept 🕑 12 noon - 1pm Sign up here: us06web.zoom.us/meeting/regi... The ME Local Network works to strengthen mutual support between local ME groups across the UK. Read more 👇 mehub.uk/meln/

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...

The recording for ‘You’re not imagining it: Long Covid, ME & invisible illnesses in South Asian communities’ is now available! Watch here 👇 www.youtube.com/watch?v=BOuP...

📢The next APPG on ME meeting will be on 2 Sept, 1-2pm, & will discuss Action for ME’s Big Survey initial findings and next steps. An Extraordinary General Meeting (EGM) will also be held to appoint a new Vice Chair. Ask your MP to attend 👇 www.actionforme.org.uk/the-next-app...

Have you registered for Action for ME's AGM? 📅 22 Sept 2026 🕑 2pm–3pm 💻 Online Join CEO Sonya Chowdhury for updates on our work and future priorities. Register today: us02web.zoom.us/webinar/regi... #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

Last week we launched the Severe ME Inquiry report - a huge thank you to all involved. The Inquiry examined the experiences of people living with severe & very severe ME. Read the full report👇 www.actionforme.org.uk/the-more-ill...

💻 Join our ME Friends Online forum & connect with others who truly understand. Our friendly forum is open to users aged 18 & over from the UK. There’s a range of topics being discussed, including a section for games! Sign up & read the Terms of Use 👇 www.actionforme.org.uk/sign-up/

The HERITAGE study is looking for participants that have had ME/CFS or Long Covid for over two years – is that you? Find out more about this latest research project to see if you want to participate. heritage.leeds.ac.uk #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #Research

📢 Register for the PRIME International Symposium! Explore emerging ME/CFS research with researchers, clinicians & people with lived experience. 🗓️ 28 Sept, 9am–29 Sept, 2pm 📍 Edinburgh & online. Register & more info: www.actionforme.org.uk/register-for...

We are pleased to announce that Seamus Logan MP is joining our Parliamentary Champions network! We would like to thank Seamus for his dedication to supporting people with ME. We are looking forward to working with him. Read more on our website👇 www.actionforme.org.uk/seamus-logan...

We are pleased to announce that Luke Akehurst MP is joining our Parliamentary Champions network! We would like to thank Luke for his dedication to supporting people with ME. We are looking forward to working with him. Read more on our website👇 www.actionforme.org.uk/luke-akehurs...

📢 Registration is now open for Action for ME's 2026 AGM. 📅 22 Sept 2026 🕑 2pm–3pm 💻 Online via Zoom Join CEO Sonya Chowdhury as we reflect on the past year and look ahead to future priorities. Register: us02web.zoom.us/webinar/regi... #MECFS #PwME #MyalgicE

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. Our resource helps people with ME communicate how ME affects them and what support they need. Download here 👇 www.actionforme.org.uk/resource/imp...

🎧 New podcast: Sonya Chowdhury joins PrecisionLife CEO Steve Gardner on Biology Matters to discuss the impact of ME, advances in research, and how emerging evidence can accelerate change. precisionlife.com/biology-matt... #MECFS #DecodeME #Genetics #Research #MyalgicE

📢 Tessa Munt MP’s amendment on compliance with the 2021 NICE Guideline on ME was debated in Health Bill Committee. It was withdrawn before a vote, but it was good to see MP support for people with ME. We’ll keep pushing for change. Read more: hansard.parliament.uk/commons/2026...