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Action for ME @actionforme.bsky.social · 29/09/2026

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

PRIME International Symposium promotional graphic highlighting Day 2, focused on current ME research, patient and public involvement, and impact, taking place 28-29 September 2026.

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Action for ME @actionforme.bsky.social · 28/09/2026

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.

Graphic from the HERITAGE study about recruitment participants. Text details the eligibility criteria, information about the study, links and a QR code in the bottom right.

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Action for ME @actionforme.bsky.social · 28/09/2026

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

PRIME International Symposium promotional graphic highlighting Day 1 and the launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium, taking place 28-29 September 2026.

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Action for ME @actionforme.bsky.social · 24/09/2026

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...

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Action for ME @actionforme.bsky.social · 23/09/2026

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...

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Action for ME @actionforme.bsky.social · 22/09/2026

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/

Graphic from Action for ME sharing the news that they have issued a joint response with the Overlapping Illness Alliance in response to an article from the Telegraph titled ‘How having a disability became cool.’ Action for ME and Overlapping Illness Alliance logos across the top.

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Action for ME @actionforme.bsky.social · 18/09/2026

📢 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...

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Action for ME @actionforme.bsky.social · 18/09/2026

😇 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...

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Action for ME @actionforme.bsky.social · 18/09/2026

⏰ 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

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Action for ME @actionforme.bsky.social · 17/09/2026

💻 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/

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Action for ME @actionforme.bsky.social · 16/09/2026

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

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Action for ME @actionforme.bsky.social · 13/09/2026

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

A participant wearing an Action for ME running vest takes part in a road race with other runners in the background. Text reads: “Join Team Action for ME to fundraise for us at the 2027 Great North Run. Applications close Friday 26th Feb 2027. Raise funds for Action for ME..."

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Reposted by Action for ME

Tessa Munt MP 🔶 @tessamunt.bsky.social · 03/09/2026

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.

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Action for ME @actionforme.bsky.social · 01/09/2026

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/

Graphic from the ME Local Network shared by Action for ME about the ME Local Network’s annual meeting on 4 September 12noon-1pm. Graphic details the itinerary and has a QR code in the bottom right corner.

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Action for ME @actionforme.bsky.social · 27/08/2026

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...

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.

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Action for ME @actionforme.bsky.social · 26/08/2026

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...

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Action for ME @actionforme.bsky.social · 26/08/2026

📢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...

Graphic from Action for ME promoting the next APPG on ME meeting, which will be held on September 2 2026. Photo in background of the Houses of Parliament. APPG on ME and Action for ME logos across the top.

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Action for ME @actionforme.bsky.social · 24/08/2026

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

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Action for ME @actionforme.bsky.social · 18/08/2026

We recently attended a Ministerial Meeting with Mabon ap Gwynfor MS, Cabinet Minister for Health & Social Care, alongside the Welsh Association of ME & CFS Support, @severemecymru.bsky.social & Long Covid Support!

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Action for ME @actionforme.bsky.social · 12/08/2026

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...

A white man lies in bed with ear defenders and an eye mask on. Behind him is a wheelchair and curtains pulled closed. Text reads “Action for ME, 25% ME Group, Severe ME Inquiry Report. ‘The more ill you become, the less care you receive’. Photo credit Lea Aring / German Association for ME/CFS.

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Action for ME @actionforme.bsky.social · 11/08/2026

💻 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/

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Action for ME @actionforme.bsky.social · 07/08/2026

Ahead of #SevereMEDay, we are launching the Severe ME Inquiry Report, exposing systemic failings in care, support and education for people with severe and very severe ME. Read today: www.actionforme.org.uk/the-more-ill... #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME #VerySevereME

A white man lies in bed with ear defenders and an eye mask on. Behind him is a wheelchair and curtains pulled closed. Text overlay reads “Action for ME, 25% ME Group, Severe ME Inquiry Report. ‘The more ill you become, the less care you receive’. Major new #SevereMEDay report exposes systemic failures people with severe and very severe ME face, and calls for urgent action from Government, the NHS and public services.” Photo credit Lea Aring / German Association for ME/CFS.

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Action for ME @actionforme.bsky.social · 06/08/2026

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

Promotional graphic for the HERITAGE study, saying “Have you had ME/CFS or Long Covid for over 2 years?” and inviting people aged 18+ who are not currently receiving specialist NHS Long COVID or ME/CFS care to “Help shape how the NHS supports people with Long COVID and ME/CFS.” Followed by QR code.

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Action for ME @actionforme.bsky.social · 30/07/2026

📢 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...

Graphic for the PRIME research project, promoting the International Symposium which takes place in-person and online on 28th-29th September 2026. Graphic includes text about the event and a QR Code in bottom right to register interest.

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Action for ME @actionforme.bsky.social · 29/07/2026

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...

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Action for ME @actionforme.bsky.social · 29/07/2026

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...

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Action for ME @actionforme.bsky.social · 28/07/2026

📢 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

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Action for ME @actionforme.bsky.social · 21/07/2026

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Action for ME @actionforme.bsky.social · 17/07/2026

📢 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...

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Action for ME @actionforme.bsky.social · 16/07/2026

🎧 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

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Action for ME @actionforme.bsky.social · 15/07/2026

📢 Join our third PRIME webinar on post-exertional malaise (PEM) - the hallmark symptom of ME. 🗓️Thurs 30 July 🕑2-5pm GMT 📍Online via Zoom Hear from expert speakers as we explore what PEM is, what causes it, & how it can best be explained & defined. Register here 👇 us02web.zoom.us/webinar/regi...

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Action for ME @actionforme.bsky.social · 13/07/2026

📢 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...

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Action for ME @actionforme.bsky.social · 13/07/2026

📢 DecodeME update UK Biobank's suspension of all researcher access to its Research Analysis Platform has delayed completion of further DecodeME analyses. The latest update suggests access could begin reopening from September. #MyalgicE #MECFS #pwME #DecodeME

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Action for ME @actionforme.bsky.social · 08/07/2026

📢 Timms Review: interim findings are expected to say the points-based disability benefits system is not fit for purpose. For many people with ME, PIP is vital for independence & support. The system does not reflect fluctuation or energy limitation. Read more: www.actionforme.org.uk/timms-review...

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Action for ME @actionforme.bsky.social · 07/07/2026

💻 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/

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Action for ME @actionforme.bsky.social · 11/06/2026

Register for the PRIME International Symposium to explore emerging ME/CFS research with researchers, clinicians, charities and people with lived experience. 🗓️ 28 Sept 9am-29 Sept 2pm Find out more and register here 👇 www.actionforme.org.uk/register-for...

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Action for ME @actionforme.bsky.social · 10/06/2026

📢 Parliamentary written questions on severe & very severe ME have been submitted & answered. Baroness Scott asked four questions in May. Read the questions & answers here 👇 www.actionforme.org.uk/parliamentar...

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Action for ME @actionforme.bsky.social · 10/06/2026

🧬 The recording from last month’s Sequence ME & Long Covid webinar is now available to watch on our YouTube channel 🔗 Watch the recording here: youtu.be/2PFdsYCfiJo

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Action for ME @actionforme.bsky.social · 04/06/2026

Join our third PRIME workshop to learn more about post-exertional malaise (PEM). PEM is the hallmark symptom of ME, where physical or mental activity can cause a delayed worsening of symptoms, often hours or days later. This can include debilitating fatigue, pain, brain fog, and flu-like symptoms.

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Action for ME @actionforme.bsky.social · 04/06/2026

📢 The recording from the second PRIME research webinar is now available on our YouTube channel! 🔗 Watch the recording here: www.youtube.com/watch?v=NMlM...

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Action for ME @actionforme.bsky.social · 03/06/2026

🎙️Action for ME discusses ME research on BBC Radio Gloucestershire Read the BBC article here: www.bbc.co.uk/news/article... Listen back via BBC Radio Gloucestershire here: www.bbc.co.uk/sounds/play/...

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Action for ME @actionforme.bsky.social · 22/05/2026

A huge THANK YOU to everyone who supported our BBC Lifeline Appeal by sharing, commenting, donating and helping raise awareness of ME 🧡 While our appeal has now finished on the BBC, the impact continues.

Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal campaign, which has now come to an end.

Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal, including statistics from their social media pages.

Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal, including the audience that they reached.

Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal, including numbers regarding how many people joined the community.

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Action for ME @actionforme.bsky.social · 18/05/2026

📢 Join the PRIME ME/CFS Research Involvement Hub! Today, PRIME have launched their new ME/CFS Research Involvement Hub which aims to build a virtual network of people with lived experience of ME and match them with research projects to help shape the delivery of those projects.

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Action for ME @actionforme.bsky.social · 12/05/2026

🧬Join our Sequence ME & Long Covid Webinar Following the announcement of major funding (£4.75 million) from the UK Government, join our webinar to find out more about what this means for the study, and what happens next. 📅 26 May, 14:30-15:30pm GMT 📍 Register here: us02web.zoom.us/webinar/regi...

Graphic promoting the “Sequence ME & Long Covid Webinar” from Action for ME. The image includes webinar details for Tuesday 26 May, 14:30–15:30, alongside a blue-toned DNA illustration and Action for ME branding.

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Action for ME @actionforme.bsky.social · 12/05/2026

📢 Today is #WorldMEDay ME is a seriously disabling condition impacting at least 67 million people worldwide. Medical education is lacking in most countries and patients are regularly denied the care they deserve.

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Action for ME @actionforme.bsky.social · 12/05/2026

🚨 Sequence ME & Long Covid in The Times We're pleased to see national coverage in The Times covering today's major funding announcement. Read the article here (please note it is paywalled): www.thetimes.com/uk/healthcar...

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Action for ME @actionforme.bsky.social · 12/05/2026

🚨 Major funding secured for Sequence ME & Long Covid, a DecodeME project. On #WorldMEDay, we’re thrilled to share that the study has received £4.75 million from the UK government, signalling a transformative step towards uncovering the biological roots of ME/CFS and Long Covid.

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Action for ME @actionforme.bsky.social · 05/05/2026

Thank you to Montell Douglas for presenting our BBC Lifeline video, helping bring these stories to life and shine a light on what life with ME can really look like 🧡 Watch now on BBC iPlayer to hear from those affected and learn more about the work we’re doing: www.bbc.co.uk/iplayer/epis...

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Action for ME @actionforme.bsky.social · 27/04/2026

1/2 🚨 People with ME need your help. ME is a devastating and misunderstood disease, with its symptoms affecting an estimated 1.35 million people in the UK. For many, it means not only losing their health, but also their independence and the life they once knew. #pwME #MECFS ⬇️

Image of bed with rumpled sheets in low light with text: “5 things everyone should know about ME.”

Graphic with text “ME can affect anybody, at any time. Most people with ME had very full, healthy lives before getting sick.”

Alt text: Graphic with text: “ME steals lives. It is profoundly disabling and has one of the worst qualities of life of any disease.”

Graphic with text: “1 in 4 people with ME are severely affected, unable to leave the house or their bed.”

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