📢 Have your say in the conversation about the SEND reform! Ahead of the publication of the Schools White Paper this year, the Dept for Education is hosting a series of SEND engagement events across the country. These events are for parents & carers, alongside teachers & other education experts.

Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS We're looking for: A keen, experienced Research Nurse A gifted molecular immunologist with a strong bioinformatics background www.imperial.ac.uk/.../descript.... www.imperial.ac.uk/.../descript....

In her first article (part II will follow) Natalie Hilliard shares insights from physiotherapy that will be of particular use to therapists and counsellors. This includes an understanding of post-exertional malaise, the challenges of trying to pace properly, and the impact of

LOCOME Research Project webinar on 5th December - a recording is now available www.youtube.com/watch?v=ITZ3... Screenshot from latest Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS

⏰ 24 hours left! Together, you’ve helped raise over £135,000 to improve the lives of people with ME and accelerate vital research. Although our match funds have now run out, every single donation still counts. ✨ Donate here: bit.ly/2025-big-give  Thank you so much 🧡

@iansample.bsky.social @madifinlay.bsky.social Follow up episode? 😊 This study builds on the DecodeME study that you covered in the summer on your Guardisn Science Weekly podcast #ME #LongCovid #LOCOME @actionforme.bsky.social @decodemestudy.bsky.social

(1/4) 🧬 @precisionlife.bsky.social has released exciting results from the LOCOME project Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME.

Our #ThereForME Advent Calendar wonderful people who have been #ThereForME starts tomorrow! To start us off, we'd like to share this reflection kindly written for us by Jenny Wilson, who many know as a fierce advocate for the community working closely with Dr Weir.

🎥 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

🔍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.

🚨 NEXT WEDNESDAY 19 NOVEMBER We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME. If you have the energy - an email to your MP asking them to attend can go a long way 🙏 Template in next post👇

From people who did LP: “Then they tell you that it’s your own fault for having ME, because you’re doing ME. I became physically exhausted and unwell, and felt guilty because you would have to be pretty stupid when you’re making yourself ill.”

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/

Do you know any medical students who might like to win £250 by writing a 500 word essay about #ME ? I can provide lots of info to help any interested student and access to high quality resources and lived experience.

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.

Today's guest blog is from Rosie Barrett, who writes about her sister Alice's experiences. Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.

🥼🙏?

Got young kids who like learning stuff, but prefer to laugh while they do so? Boy do I have the book for you! 👇😉🦣

After a long pause, I've just done another England Covid & NHS update as we head into the autumn/winter season. TLDR: we're in a significant Covid wave now, the NHS is stretched, get boosted if you're eligible. christinapagel.substack.com/p/england-is...

I had no idea it was so costly!

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

1/2 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

Incredible talk here at the #UNGA80 #indoorair call to action from our very own Violet Affleck! Reminding us that #longcovid affects all of us, the #covid19 pandemic is ongoing and we have failed to protect our children. Thank you, Violet, for speaking the truth to this room 🙏🏻

Today's #ThereForME blog shares findings from a mini survey. We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like. Link in next post 👇

Want to understand the #GreatestMEdicalScandal in one sentence? "Most said they would be unsure about accessing a specialist service due to the risk of inappropriate care causing harm to their loved one" Read it in the latest @thereforme.bsky.social update --> www.thereforme.uk/p/commission...

#SafeAir4All In collaboration with @gmhazardscentre.bsky.social we've produced a fact sheet for MPs. #SafeAir4All campaign Can you contact your MP about the need for safe air in healthcare settings? Find out more here: shh-uk.org/get-in-touch...

1/5 📢 Early Day Motion (EDM) tabled on the Final Delivery Plan We’re pleased to see this EDM tabled by @tommorrisonmp.bsky.social to discuss the Final Delivery Plan on ME/CFS. #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #EDM ⬇️

Thinking of Savannah and hoping all clinicians and advocates can work together “at pace” (as government likes to say) for her best interests in accordance with needs of someone with severe ME. 💙

🌟 Exciting News! We’re thrilled to announce the upcoming YE International Workshop Series – Vienna 2025 🎉 📍 Vienna, Austria 📆 27–28 November 2025 Join us as we bring together early career researchers in #MECFS to connect, collaborate & spark new ideas! 🔬✨ #SaveTheDate #MECFS #MEresearch #ECR

Martha Mills was one of my favourite people. She should have had her 18th birthday today. Her parents have campaigned tirelessly to improve healthcare so that others won’t experience what they did. They are heroes.

Following @decodemestudy.bsky.social's success, it's vitally important that the Government commits to strategic research funding & we'll continue our calls for a national research platform Thank you @johnmilnehorsham.bsky.social for leading on this call to the Secretary of State 🙏

Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

2/2 Those giving evidence have been identified via service users, the 25% ME Group & wider networks. Evidence will be shared in written, recorded or live formats. Minutes will be published after on the APPG website. #pwME #MyalgicEncephalomyelitis #APPG

1/2 📢 APPG on ME 📆 Wed 10 Sept | ⏰ 4pm The Group will open its enquiry into severe ME, hearing directly from people with lived experience. 👉 Ask your MP to attend: appgme.co.uk/contact-your... #SevereME #MECFS ⬇️

🔥 Please share - Very important care campaign for those with severe & very severe ME: "Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness" #pwME ♥️💙🫂 www.crowdjustice.com/case/justice...

The Bear Tapestry

People without #MECFS have been asking why this project is called Lives We Cannot Live. #PwME Showing at Oxo Tower Gallery London from 24/9/25 More info mailchi.mp/16f8611232cc... #socialdocumentary #documentaryphotography #invisibleillness

Very grateful to the @theguardian.com Science Weekly team and of course the excellent @decodemestudy.bsky.social for this breakthrough science. podcasts.apple.com/gb/podcast/s...

Any chance you could alert Leeds Hospital to this please, shared by MEAssociation (a rare endorsement for an individual’s case). www.change.org/p/the-nhs-mu...

Late singer Kara Jane's family has released her album "In Limbo" posthumously on #SevereMEday 💙. Read more about Kara, the album, and the impact of severe ME in this wonderful article by @naomiwhitt.bsky.social in @thesicktimes.org. thesicktimes.org/2025/08/08/p...

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt. Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them. 1/4

The Coroner (a DCC employee based at County Hall) refused to call the key witness from social services. Juliette Hill could have prevented Maeve's premature death if she had been guided by her statutory duty to protect the most vulnerable in society. Hill was under investigation by Social Work 2/4

Safeguarding records for the final year of Maeve’s life show social workers, nurses and a mental health assessor, instead of focusing on managing Maeve’s ME, were investigating concerns about Boothby. (£) www.thetimes.com/uk/healthcar... #MEcfs #LongCovid

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(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

We are listening to the experiences of people in Leeds living with multiple long-term health conditions. Katie and Jude have been working with us to carry out interviews and gather people’s stories. You can share your experiences too: re-url.uk/W4TL #HealthwatchLeeds #LongTermConditions

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!