Action for ME

@actionforme

Providing support & holistic healthcare services to people of all ages affected by #MECFS. Charity number: 1036419 / SC040452

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Action for ME@actionforme· 4d

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.

Action for ME@actionforme· 5d

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.

Action for ME@actionforme· 12d

📢 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.

Action for ME@actionforme· 13d

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...

Action for ME@actionforme· 13d

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...

Action for ME@actionforme· 14d

📢 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

Action for ME@actionforme· 21d

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...

Action for ME@actionforme· 25d

📢 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...

Action for ME@actionforme· 26d

🎧 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

Action for ME@actionforme· 27d

📢 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...

Action for ME@actionforme· 29d

📢 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...

Action for ME@actionforme· Jul 8

📢 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...

Action for ME@actionforme· Jul 7

💻 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/

Action for ME@actionforme· Jun 11

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...

Action for ME@actionforme· Jun 10

📢 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...

Action for ME@actionforme· Jun 10

🧬 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

Action for ME@actionforme· Jun 4

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.

Action for ME@actionforme· Jun 4

📢 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...

Action for ME@actionforme· Jun 3

🎙️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/...

Action for ME@actionforme· May 22

Thanks to your support, we reached hundreds of thousands of people on social media alone, introduced many new people to Action for ME, and helped bring the realities of ME to mainstream TV audiences across the UK.

Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal, including two quotes providing positive feedback about the campaign.

Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal. Text includes a thank you and advises that the video is now on their YouTube channel.

Action for ME@actionforme· May 22

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.

Action for ME@actionforme· May 18

📢 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.

Action for ME@actionforme· May 12

🧬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.

Action for ME@actionforme· May 12

📢 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.

Action for ME@actionforme· May 12

🚨 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...

Action for ME@actionforme· May 12

🚨 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.

Action for ME@actionforme· May 5

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...

Action for ME@actionforme· Apr 27

2/2 🎥 Watch our BBC Lifeline video to learn more and donate for change: www.bbc.co.uk/programmes/m... #BBCLifeline #MyalgicE

Graphic with text: “An estimated 1.35 million people in the UK have ME or ME symptoms, yet there is still no cure, diagnostic test or effective treatments.”

Graphic with text: “ME research has reached a turning point, with scientists identifying genetic differences in people with ME.”

Image of a bed with text: “People with ME need your help. Support our work to fund biomedical research, specialised healthcare and vital support.”

Action for ME@actionforme· Apr 27

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.”

Action for ME@actionforme· Apr 22

We're delighted to announce Montell Douglas as our BBC Lifeline Presenter! Montell will feature in our 9-minute video, alongside our CEO, Sonya Chowdhury, and the real stories of Andrea, Alice and Isla, and Mark who will be sharing their experiences of living with ME.