Action for ME
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actionforme.bsky.social
Action for ME
@actionforme.bsky.social
510 followers 12 following 430 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
🎄 6 days to go until the start of our @biggive.bsky.social Christmas Challenge!
 
We are the only UK charity providing direct services, including healthcare, to people with ME of all ages – our services have been described as a ‘lifeline’.
 
November 26, 2025 at 2:00 PM
actionforme.bsky.social
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It was great to speak with MPs yesterday as part of the Overlapping Illness Alliance 🤝

@ehlersdanlos.bsky.social
@longcovidsupport.bsky.social
@longcovidkids.bsky.social
Mast Cell Action
PoTS UK

#OIA #pwME

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Four adults stand smiling indoors beside a banner for the Overlapping Illness Alliance. The banner shows the alliance logo, a QR code, and partner organisation logos. The group wears event lanyards; they are positioned in front of wooden panelling and a doorway with natural light behind.
November 26, 2025 at 9:21 AM
actionforme.bsky.social
One week to go until our Big Give Christmas Challenge is back!
biggive.bsky.social Big Give @biggive.bsky.social · 8d
The #ChristmasChallenge is almost here, and from 2–9 December, your donation to over 1,500 incredible charities can be doubled.

We’re kicking things off with a special message from #PrueLeith, #GaryLineker and #ImeldaStaunton.

Explore the charities now: https://bit.ly/CC25-Social
November 25, 2025 at 3:07 PM
actionforme.bsky.social
📢 There are only 7 days to go until our @biggive.bsky.social Christmas Challenge!
 
From midday on 2 December to midday on 9 December 2025, donations to Action for ME will be doubled whilst the match-pot lasts, at no extra cost to the giver!
November 25, 2025 at 2:00 PM
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📢 Rescheduled: APPG on ME severe ME enquiry evidence session

📆 Wednesday, 10 December

⏰ 3.30pm – 5.30pm

Invite your local MP to attend 👇

actionforme.eaction.org.uk/appg-severem...

#pwME #SevereME #APPG

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Graphic featuring the Houses of Parliament under a blue sky. Overlaid text reads “Ask your MP to attend!” with an envelope icon. Below, a green banner says “Rescheduled: APPG on ME’s severe ME enquiry evidence session.” Logos for Action for ME, the ME Association, and the APPG on ME appear at the top.
November 25, 2025 at 11:00 AM
actionforme.bsky.social
Yesterday, MPs gathered in Westminster Hall to debate government support for people with ME and what needs to change. We’ve pulled together a summary of the key points, actions, and commitments discussed, using AI to assist in summarising the Westminster Hall debate transcript.
November 20, 2025 at 2:50 PM
actionforme.bsky.social
Thank you to @tessamunt.bsky.social for tabling yesterday’s Westminster Hall debate on ME and for representing the ME community. Your continued commitment, and your work to push for better care, proper research funding and recognition for people with ME, is hugely appreciated 🧡
November 20, 2025 at 9:57 AM
actionforme.bsky.social
🎥 Watch today's Westminster Hall Debate live on Parliament TV

Tabled by Tessa Munt MP, today's debate will focus on government support for people with ME. We will be sharing an overview of the debate after.

⏰ 4:30pm today, Wednesday 19th November

👉 Watch here: www.parliamentlive.tv/Commons
November 19, 2025 at 11:10 AM
actionforme.bsky.social
👏
germainehypher.bsky.social Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 8d
My article from the latest issue of @actionforme.bsky.social’s magazine, InterAction. If you are a member of AFME you can enter the competition to try and win a free copy of Crafting a Path Through Illness. 😀📖

#mecfs #me/cfs #chronicillness #invisibleillness #chronicpain #art #crafts #CraftSky
A magazine article is illustrated with a photo of Germaine, a white Roman with short red hair, and one of her drawings titled The Nature of My Wheelchair. It’s is a black and white drawing depicting the shape of a wheelchair solely via plants and flowers. The article title, introduction and first page of text is as follows: Exploring creative play Germaine Hypher shares low-energy ideas for expressive arts and crafts. Speed read... Germaine uses artistic expression and useful crafts to give her a sense of comfort and wellbeing while living with ME. She enjoys tangible crafts such as knitting and patchwork; playing with colour with various media; doodling and collage - among other things! She also finds expressive writing helpful. Her creative play enables her to explore her feelings and identity. Having lived with ME since young childhood, I have often felt isolated, frustrated and bored. Days drag when having to rest and endure, while slipping through empty seasons at a remarkable rate. I've had to teach myself how best to pass this time, comfort myself and create a fulfilled life. Whenever possible, I've done this through arts and crafts. Playing with texture, colour and shape Chronic illness can bring grief, anxiety, depression and loss of personal identity, but some relief can be found in the varying elements of different arts and crafts. Occupying myself with the gently repetitive actions and soft textures of knitting, crochet, cross-stitch, embroidery and English paper piecing patchwork, I have felt calmed. Indeed, crafts like these have been demonstrated to affect the body in a way similar to meditation. I have also felt time and symptoms temporarily slip away when playing for a few minutes with soothing or uplifting colours via pens, pencils, pastels or watercolours. The emphasis here is on playing. rather than pushing towards any goal, and staying within my safe energy limit. Manual dexterity or stamina aren't vital, just the desire to express myself … Article concludes: …minutes of creative exploration can be the foundation of a sustainable routine that builds to a completed project or sense of satisfaction over time. When too unwell physically to play. I have found my creativity focusing on problem-solving, alternative speech (the word substitutions that appear when brain fog thickens can epitomise creativity!) and imagined adventures. Creativity is an abundant tool when met with curiosity and enthusiasm. To see more of Germaine's creations and find out about her new book, visit www.germainehypher. weebly.com Creative Writing Expressive writing is one way of releasing and sharing emotion-laden experiences, helping me to feel seen. Speech-to text functions on my phone and laptop have sometimes helped me with this. Poetry is a particularly valuable outlet for me because of its shortform nature. Blackout poetry (taking an existing page of text and blacking out all the unwanted words, just leaving those that form a unique miniature poem) even provides the topics and words to choose from. Flash fiction, brief journal entries, and stick person cartoons are other ways of embracing creative writing without having to expend energy on reams of cognitively demanding text. Chance to win You can win a copy of Germaine's book, Crafting a Path Through Illness: exploring creativity while chronically ill in our giveaway on p 34! Text below a collage of an oversized painted pink flower in a forest setting reads: This collage is created from an old calendar picture, scraps of a map, torn sections of a vintage magazine, tissue paper, and a watercolour attempt at a flower and leaves that didn't work on the page - so I tore it up to see how it might like to develop. I played with the collage in short sessions, paced over a couple of weeks, finally adding some pastel to help the different elements link together. Text below a black and white drawing of a mandala reads: My first go at a zentangle mandala.
November 18, 2025 at 4:00 PM
actionforme.bsky.social
A reminder to join our Research Webinar on LOCOME's final findings as the project closes.

📅 Friday 5 December, 2pm-3pm (UK time)

📍 Free online webinar via Zoom

Hear from researchers and advocates Dr Steve Gardner, Krystyna Taylor, Helen Baxter, Daphne Lamirel, and Sonya Chowdhury as they share:
Promotional graphic for a webinar by Action for ME, the University of Edinburgh, and PrecisionLife about LOCOME findings on ME and long Covid. It invites viewers to join for updates on the project’s final findings, scheduled for Friday 5 December at 14.00-15:00.
November 18, 2025 at 2:05 PM
actionforme.bsky.social
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📢 Reminder: Invite your MP to attend tomorrow’s ME debate!

A Westminster Hall debate on ME, tabled by @tessamunt.bsky.social, takes place tomorrow at 4.30pm.

#pwME #MECFS #MyalgicEncephalomyelitis

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A wide view of the Houses of Parliament in London beneath a blue sky. In the top right corner is the Action for ME logo. Text on the image reads: “Policy news: Last chance to invite your MP to tomorrow’s Westminster Hall Debate.”
November 18, 2025 at 12:30 PM
actionforme.bsky.social
There’s still time to take part in our Christmas Angels project! 😇

This project is a heartwarming way to spread festive cheer to people with ME 🧡
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 17, 2025 at 12:01 PM
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
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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
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
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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