Action for ME
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actionforme.bsky.social
Action for ME
@actionforme.bsky.social
500 followers 12 following 410 posts
Providing support & holistic healthcare services to people of all ages affected by #MECFS

Charity number: 1036419 / SC040452
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actionforme.bsky.social
(1/2) 🎥 Conference presentation now available on YouTube!

🧬 This week we shared our work on Patient and Public Involvement within DecodeME at The International Conference on Clinical and Scientific Advances on ME and long Covid, held in Porto, Portugal.
November 14, 2025 at 3:15 PM
actionforme.bsky.social
(1/2) 📢 Westminster Hall debate on government support for ME

Tessa Munt MP has tabled a debate on government support for people with ME next week in Westminster. This is an important opportunity to make sure the voices of people with ME are heard in Parliament.
A graphic with a photo of the Houses of Parliament and Big Ben in the background. Over the image is a green speech-bubble shape containing a white envelope icon and the text “Invite your local MP!”. At the bottom, a green banner reads: “Wednesday 19th November – Westminster Hall Debate: tabled by MP Tessa Munt”. The Action for ME logo appears in the top left corner.
November 14, 2025 at 9:51 AM
actionforme.bsky.social
🔍There's still time to take part in our Big Survey! 📊

This year we're aiming for our biggest response yet - so we'd love to hear from you if you've yet to take part. Your responses will shape our work going forwards, contribute to ME research and shine a light on the impact of ME on your life.
A girl lies on her bed smiling at her laptop. Text on the image reads: “Big Survey – take part! Did you know we have a young people’s survey too for those aged 17 and under? Take part in The Big Survey.”
November 13, 2025 at 9:37 AM
actionforme.bsky.social
Would you like to send or receive a card from another person with ME this Christmas? 🎄

Or do you know someone severely affected by ME who would appreciate a card?

Join our Christmas Angels project! 😇
Photo of a wooden angel ornament hanging on a Christmas Tree. Text beneath provides details about Action for ME’s Christmas Angels project and includes a QR code to the sign-up form.
November 10, 2025 at 2:05 PM
actionforme.bsky.social
📢 The International Conference on Clinical and Scientific Advances on ME and Long Covid is taking place in Porto, Portugal next week and you can register to attend online for free!
Graphic from Action for ME promoting the 2nd International Conference on Clinical & Scientific Advances on ME & Long Covid, 12-13 November 2025. Photo of people sat at a conference with Action for ME logo in top right corner.
November 10, 2025 at 11:10 AM
actionforme.bsky.social
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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:
November 5, 2025 at 12:36 PM
actionforme.bsky.social
📢 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.
Graphic from Action for ME promoting the launch of the Overlapping Illness Alliance. Text includes details of how the alliance brings together charities committed to improving recognition, care and support for people living with complex overlapping conditions and includes logo in bottom half.
November 4, 2025 at 1:01 PM
actionforme.bsky.social
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:
Photo of a wooden angel ornament hanging on a Christmas Tree. Text beneath provides details about Action for ME’s Christmas Angels project and includes a QR code to the website article.
November 4, 2025 at 10:23 AM
actionforme.bsky.social
✨ 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
Graphic with the Trustees’ Week and Action for M.E. logos. Text reads: “Thank you to our incredible Board of Trustees! Hear from Ros, Wendy and Colin, our newest Trustees.” Includes an orange heart in a hand icon. Action for M.E. graphic with a quote from trustee Ros Boyle: “I found amazing advice and understanding from the charity... I wanted to support the charity’s mission and ensure those living with ME get the care and support they need.” Action for M.E. graphic featuring Wendy Lippmann, Trustee. Text describes her experience as a parent of someone with ME and her passion for awareness, research, and improving quality of life for people with ME. Action for M.E. graphic featuring Colin Morgan, Trustee. Text explains he became a trustee in 2025 after volunteering, inspired by his wife’s experience with severe ME. He’s a professional engineer and renewable energy specialist.
November 3, 2025 at 1:53 PM
actionforme.bsky.social
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.
Graphic promoting Action for ME’s news story of the British Psychological Society Good Practice Guidelines for Psychologists Working with People with ME/CFS having been updated in October 2025. The British Psychological Society, Action for ME and ME Association logos across the top.
November 3, 2025 at 12:41 PM
actionforme.bsky.social
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/
A quote from Andy Devereux-Cooke, PPI Partner for The Big Survey. The quote reads: “In the same way that we, as a community, need biomedical research, we also need the information about us that will be collected by this year's Big Survey. Knowing, in broad terms, who the patient population currently are, and what their experience is of living with ME/CFS, will be invaluable in guiding advocacy and research.” Graphic with a dark teal background and orange and white text. The headline reads: “Big Survey - take part!” Below, it says: “Help shape our work and provide insights into what life with ME is like.” A large orange button-style box reads: “Take part in The Big Survey.” At the bottom is a simple bar chart illustration and the Action for ME logo.
October 31, 2025 at 10:03 AM
actionforme.bsky.social
More on DecodeME and our partnership with the University of Edinburgh 👇

www.actionforme.org.uk/research-cam...

#MyalgicE #MyalgicEncephalomyelitis #MEAwareness
Graphic with DecodeME and Action for ME logos, laptop illustration, and text: “Want to find out more? Read more about DecodeME and our partnership with the University of Edinburgh, on our website!”
October 30, 2025 at 3:35 PM
actionforme.bsky.social
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
Poster with DNA graphic and colourful text circles at Voluntary Health Scotland conference. Caption: “As finalists, we presented on PPI in DecodeME at the Voluntary Health Scotland conference.” Graphic titled “The impact of PPI” showing benefits: improved accessibility, shaped communications, and informed questionnaires. Includes quote: “DecodeME would not have delivered its goals without PPI.” Graphic titled “Feedback from the DecodeME team” highlighting diverse PPI input, influence on expertise, and citizen science. Quote: “My role with DecodeME helped me return to work after being too unwell.” Graphic titled “Our key PPI takeaways” with points on embedding PPI in governance and equal decision-making. Quote: “Having PPI in leadership has been crucial to the study functioning.” Logos for DecodeME and Action for ME.
October 30, 2025 at 3:35 PM
actionforme.bsky.social
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📢 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
October 29, 2025 at 2:51 PM
actionforme.bsky.social
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We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.

An update from the APPG's Chair, @joplatt.bsky.social MP, is attached.

#MyalgicE #MyalgicEncephalomyelitis
Statement from the APPG on Myalgic Encephalomyelitis (ME) by Jo Platt MP explaining that a planned evidence session did not go ahead because many MPs were in their constituencies, reassuring that MPs remain committed, and noting efforts to reschedule the session soon.
October 29, 2025 at 9:31 AM
actionforme.bsky.social
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/
Graphic with heading “FREE counselling for young people with ME.” Illustration of a young person sitting at a desk with a laptop. Text reads: “Available for young people aged 11–18 with either diagnosed or suspected ME. Our counsellors understand ME and can talk to you about your feelings, your life, your situation, and your goals. Graphic with an orange banner that reads: “Counselling is confidential & non-judgemental.” Below is an icon of two hands holding a heart. Text underneath says: it’s a safe space to talk about challenges and how you’re feeling with a professional who understands ME it’s an opportunity to be listened to and supported. Graphic with an orange banner that reads: “Counselling can help you develop coping skills.” Below is an orange icon of a plus sign. Text underneath says: it can help you build self-worth and self-acceptance it can improve your communication and relationships. Graphic showing a smartphone displaying Action for ME’s Young People’s Counselling Service webpage. Above it, bold text reads: “Head over to our website to find out more!” The page explains that counsellors understand ME and are here to listen and support young people.
October 24, 2025 at 2:21 PM
actionforme.bsky.social
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...
Text reads: Could you be an angel this Christmas? Join our Christmas Angels project and spread festive cheer to people with ME. Image of a Christmas tree decoration.
October 24, 2025 at 9:51 AM
actionforme.bsky.social
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.
Graphic promoting Action for ME’s medical student essay competition. Text details the impact of the essay competition and includes the essay title and deadline, which is noon Monday 3 November 2025. Action for ME logo in lower right corner with QR code that links to associated webpage beneath.
October 21, 2025 at 9:27 AM
actionforme.bsky.social
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-...
A runner wearing an Action for M.E. vest, sunglasses, and a race number celebrates with her arms raised as she crosses the finish line. Text on the image reads: “Wishing the best of luck to our Great South Run team today!” with a smaller graphic that says “Go Team.”
October 19, 2025 at 8:00 AM
actionforme.bsky.social
🤝 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
A YouTube thumbnail showing a video call between Prof Chris Ponting and David Tuller. The YouTube logo appears above an image of a laptop displaying their video conversation. Text below reads: “Prof Chris Ponting discusses the PRIME research project with David Tuller.”
October 16, 2025 at 9:02 AM
actionforme.bsky.social
(cont.)
The Big Survey is open to people in the UK who live with ME or have long covid with ME symptoms, whether or not they have a diagnosis of ME. If you are unable to complete the survey yourself, a carer is welcome to fill it out on your behalf. We have collaborated with Dr Katharine Cheston from Durham University, who has lived experience of ME, and who will be analysing the data. We will also be working with Dr Audrey Ryback from Edinburgh University. More information is available on our website. The survey is open from 13th October 2025 - 27th January 2026. Thank you for supporting our research! More information is available on our website.
October 13, 2025 at 10:24 AM
actionforme.bsky.social
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
October 13, 2025 at 10:19 AM
actionforme.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
The Action for ME logo appears in the top left corner. Below, white text on a dark background reads: “Register now for the Big Survey 2025, launching next week.” The image includes someone working on a laptop.
October 9, 2025 at 10:46 AM
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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
A graphic announcing that Action for ME has become the newest affiliate charity partner of Our Future Health. It shows two hands holding a card with the Action for ME logo, surrounded by a yellow and navy patterned border. A graphic featuring a quote from Dr Raghib Ali, CEO and Chief Medical Officer of Our Future Health, welcoming Action for ME as an affiliate charity partner and highlighting their shared aim to help people live longer, healthier lives.
October 8, 2025 at 2:04 PM
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🔬 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

⬇️
A researcher wearing a mask, gloves, and a lab coat holds up a blood sample tube for examination. The image includes the Action for ME logo and a headline stating, “Researchers say they have developed the first accurate blood test to diagnose ME.
October 8, 2025 at 8:31 AM