It is heartening to know that we have an ally in this role who understands the decades of neglect faced by the #ME community.
I sincerely hope you can meet with @tessamunt.bsky.social very soon and that we will see a step change in government actions on #ME and Long Covid.
#ThereForME
SYMpToMs OF OVARIAN CANCER FEELING FULL QUICKLY AND/OR LOSS OF APPETITE 1 2 PERSISTENT BLOATING (NOT BLOATING THAT COMES AND GOES) 3 NEEDING TO WEE MORE URGENTLY OR MORE OFTEN THAN USUAL 4 PAIN IN YOUR TUMMY OR PELVIS (THE AREA BETWEEN YOUR HIP BONES) Target Ovarian Cancer
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
Summary The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system. Until now policy has been unclear. This document makes it plain that nothing with any evidence base is on offer and that there is no justification for continuing to commission services based on the proposed model. With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths. The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS. This neglect cannot continue to be tolerated. Continuing current provision without medical leadership will not result in improved outcomes for patients. Filling the vacuum with well-intentioned, but ineffective 'therapies' is a poor use of resources and therapists’ time.
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):
A text: ‘Open call!’ Below it a hand-written text reads ‘Myalgic Encephalomyelitis Kills’. A text: ‘An online Group Exhibition’.
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
Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B
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: healthwatch@yorkcvs.org.uk 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 fundraise@longcovid.org or click here for more: www.longcovid.org/get-involved...
Graphic from Action for ME promoting the Department for Education's SEND engagement events. Text in top half: 'Have your say in the conversation about the SEND reform through a series of online and in-person events' Photo in bottom half of school children. Action for ME logo in top right corner.
📢 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. "Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME. The webinar shared the project findings and discussed the next steps."
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
Screenshot of abstract
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.
Advent Reflection for the ME Community Advent is a season of hope, peace, joy, and love - a time to prepare for the coming of the Saviour, Jesus Christ. Yet for those of us with ME, Advent and Christmas often bring other emotions too: sorrow, isolation, and the sharp reminder of all we cannot do. While others gather to celebrate, many of us remain in darkened rooms, unable to tolerate light, noise, or company. It is then that the loneliness of illness feels most acute and can feel overwhelming. And yet, Advent is precisely about light shining in darkness, and hope being born when all seems lost. (cont'd)
As a fifty-year veteran of ME, I have witnessed two parallel stories unfold. One is the steady progress of science, gradually uncovering some of the biological roots of this devastating disease during the last quarter of the 20th century. The other is a darker story - of denial, distortion, and stigma, as powerful voices from 1988 onwards sought to redefine ME as merely psychological, and bury the research and knowledge gained. This falsehood caused profound harm: patients were abandoned, disbelieved, and sometimes destroyed by the very systems meant to protect them, while parents endured false accusations of FII. (cont'd)
But now, the truth is coming to the fore again, and the knowledge, long buried, is being regained. A new generation of scientists is rediscovering the evidence; silenced voices are being heard. For the first time, there is genuine, evidence-based hope - of biomarkers, of understanding, of treatments to come. Though some still cling to the old dogma, the medical darkness is giving way to dawn. (cont'd)
This Christmas, as we await the coming of Christ - the Light of the World - we also wait for the healing of truth and compassion. The hope of Advent is not naïve; it is forged in endurance and kept alive by faith. Let us hold fast to that hope - that soon, light will shine fully into this darkest of medical chapters, and no one with ME or Long Covid will be left unseen, unheard, or disbelieved again. With love to all in the community, Jenny
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
Thank you for doing the course.
And out of interest, how well did it cover measures for reducing the spread of airborne pathogens? Air filters? Proper masking?
Thank you 🙏
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.”
🔍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.”
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.
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.
