Are you a GP who needs to update your knowledge? 👇

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Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration

BBC Radio 4 Feedback full segment. Listeners share their concerns about Dr Suzanne O’Sullivan’s claim that #LongCOVID is psychosomatic. Includes an interview with @NickyProctor (11 mins) youtu.be/Du4devaRH5w?...

Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.

👏Excellent commentary to @BBCR4Feedback by Helen Gibson, @tedmonroe91.bsky.social & @nickyproctor.bsky.social 🧪 It also shows the power of @DecodeMEstudy in refuting stigmatising, outdated & false views of people like O'Sullivan.

Letter in Times today

🚨What is the problem with just testing PEM with the screening questionnaire DSQ-PEM and then stratify accordingly? A screening questionnaire is not a diagnostic tool. Using DSQ-PEM alone is insufficient because: It includes a large proportion of false positives! ⚠️ Why? 1/n

It’s estimated that 10% of women worldwide are affected by endometriosis.

WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY? YOUR WEEK? YOUR YEAR? #ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone. Practice self care & protect your community. Wear a mask This & more ko-fi.com/saltydyke/shop

These gendered inequalities don’t exist in isolation. They intersect with inequalities related to class, race, disability, sexual orientation and gender identity, creating even greater barriers to access, treatment and outcomes for many groups of women. Read more 👇 www.wbg.org.uk/article/unde...

I thought I’d go and see my Mam today, with it being Mother’s Day. She’s 88 and has advanced dementia, she won’t know if I go or not - but I do. I can’t, because of an #ME flare that’s kept me in bed. Love to others in sim situation. 🥰 to all.

Today is #LongCovidAwarenessDay and--once again for the cheap seats--ANYONE who's had Covid, particularly folks who've had it more than once, can develop #LongCovid. It's an insidious post-infectious illness like #MyalgicEncephalomyelitis. So far, no treatment or cure www.longcovidawareness.life

It’s Ovarian Cancer Awareness Month, everyone. There’s no routine screening for ovarian cancer, and it isn’t picked up by other gynaecological screening (such as smear tests). But if you do think it might be a possibility, you can ask your GP for a blood test and/or a scan.

Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th... All welcome to comment and make suggestions before the document before it is finalised.

@ashleydaltonmp.bsky.social @tessamunt.bsky.social pls take this seriously. I'm begging you. QEH's approach is UNSAFE for pwME. I am sure it would be fine for someone who isn't in rolling PEM - but that's not the case and it will kill her. 9 weeks without eating now, in agony and gastric shutdown.

#SaveSavannah #SevereMErgency #pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy

@cabruce.bsky.social @katybrc.bsky.social @actionforme.bsky.social @meresearchuk.bsky.social @meactnet.bsky.social @malnutritionme.bsky.social #ME

@ashleydaltonmp.bsky.social Your words “these must become never events” PLEASE INTERVENE TO SAVE LIFE Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS www.meresearch.org.uk/claims-of-nh...

Clip from German TV - 19-year-old Martha developed ME/CFS following COVID (English subs) Mostly confined to her sofa, carefully pacing her energy to avoid crashes. No school. No social life. No approved treatment. #LongCovid

An Open Letter to British Association for Clinicians in ME/CFS (BACME) in Response to the Document ‘Guide to Therapy’, 2025. www.s4me.info/threads/an-o... Letter authors: Jonathan Edwards (professor of connective tissue) Michelle Bull (physiotherapist) Joan Crawford (psychologist):

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n

We want to hear from women with long term health conditions to understand what is working or not in diagnosis and treatment/care. Please share your experience through our anonymous survey: www.smartsurvey.co.uk/s/77KRR3/ Or you can email: [email protected] or call 01904 621133.

We’ve created At Our Pace to support young people with Long Covid and overlapping illnesses to share their lived experiences and to build a growing set of resources shaped by those voices. Flexible, supportive, and youth-led. #Blog: www.longcovidkids.org/post/at-our-... #AtOurPace

Today we’re launching #ForThoseWhoCant, our new fundraising campaign. It’s about making fundraising more accessible, with ideas and guidance for friends, family, and loved ones who want to support our work. Email [email protected] or click here for more: www.longcovid.org/get-involved...

📢 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 🙏🏻