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/

🎉 We are delighted to launch this year’s Big Survey in collaboration with @actionforme.bsky.social! If you are in the UK living with ME or Long Covid with ME symptoms, we want to hear from you! tinyurl.com/2s4dbrkx 🧵

ME and ME-like symptoms affect approximately 1.35 million people in the UK. Find out how @kacheston.bsky.social, from our Department of Sociology and @durhamimh.bsky.social, is collaborating with @actionforme.bsky.social to understand the impact of this condition: www.durham.ac.uk/news-events/...

The Big Survey is now live! It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.

UK Action for ME Big Survey 2025 The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with @kacheston.bsky.social Dr Katherine Cheston at Durham University. www.actionforme.org.uk/research-cam... #MEcfs #PwME #CFS

An incredibly moving post: "I have spent the vast majority of my 20s in bed and alone in the darkness and silence"

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

This year, I've been lucky enough to work with @actionforme.bsky.social, as part of a collaboration between Action for ME and @durhamimh.bsky.social. (More on this soon!) For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.

My favourite bit of gardening* is when you get to eat the literal fruits of your own neglect and incompetence. *Gardening as currently consists of negotiating the obstacle course around giant overgrown fig tree I have failed to work out how to prune for the second year running…

Limping towards two weeks of leave and my capacity to mask my Wiltshire accent has reached new lows. Apologies in advance to anyone I’m meeting this week…

Given the huge clinical need, we look to the ME policy reboot with interest…yet weary and battle-scarred by decades of disingenuous policy proposals that always left an orphan specialty of under-funded, under-researched post infectious sequelae

@bmj.com's dangerous & inconsistent approach to #ME + long Covid resembles psych propaganda more than balanced reporting (notwithstanding the "Opinion" header), especially in relation to Professor Paul Garner's long covid "journey", as described in my 2021 post valerieeliotsmith.com/2021/02/01/p...

The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/...

‚What did harm my mental wellbeing (…) were the beliefs that others held about me and my illness: that I could get better, if only I reframed my own thoughts, or did more exercise, or exercised in a different way, or stopped focusing on my symptoms.‘ #LongCovid #ME

I've submitted a rapid response to this BMJ Opinion piece - speaking from my dual experience as both researcher and 'recovered ME/CFS patient' (not a term I'd choose to employ).

@thetimes.com: Scientists call for research hubs to solve mystery of ME. The article discusses the importance of government investment in ME research and features Action for ME Chief Executive, Sonya. You can read the full article (paywalled) here 👇 www.thetimes.com/article/cc88...

In the latest of our new practice research series, Alec Finlay explores the issue of belief in contested chronic illness through poetic subversion of NHS fatigue questionnaires. thepolyphony.org/2025/04/24/p...

I've just signed this open letter in support of an ambitious proposal that would transform the ME/CFS research landscape. The case of ME/CFS evidences, I believe, how health research can fail - illuminating the (all-too-human) barriers to curiosity-driven research, & how story can override science.

A deeply moving post by an anon contributor to the #ThereforME campaign: 'I will never forget stumbling out of that appointment feeling manipulated, humiliated and traumatised [...] It has left scars; I avoid the NHS as far as humanly possible and struggle to trust clinicians.'

🚀 Delighted to announce the publication of our new #MedHums101 brochure: ‘What is Medical Humanities?’ We hope it sparks your imagination, inspires your curiosity & encourages you to engage in our vibrant interdisciplinary field! tinyurl.com/what-is-med-...

Sharing 2 new actions by the Independent Advisory Group on the Cochrane review on exercise & #ME/CFS: Comment submitted on the Cochrane review: hbprojecttalk.wordpress.com/2025/03/13/i... Submission to the Cochrane Library Editorial Board: hbprojecttalk.wordpress.com/2025/03/13/i... ...

Are there any sociological studies of the figure of Paddington Bear in contemporary British culture?! One example, from this weekend in Newbury: www.bbc.co.uk/news/article...

It was a privilege to present, with my dad, to the Psychological Sciences Research Group at UWE. The presentation was a personal reflection on our family's experience of ME and the harm that dogmatic beliefs about the condition can cause. uwe-repository.worktribe.com/output/13780...

Writing a piece about long Covid five years on for the Observer. Looking for LC patients currently experiencing symptoms to talk about their story, particularly nurses/doctors 📧 [email protected] #journorequest #longcovid @longcovidsupport.bsky.social @longcovidadvoc.bsky.social

The Independent Advisory Group Cochrane established to 'embed a patient-focused contemporary perspective' into its update of the 2019 review of 'Exercise therapy for CFS' has published an Open Letter: hbprojecttalk.wordpress.com/2025/01/24/i... Hilda's excellent blog post explains the context.

Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome @dalmeet.bsky.social reports

Sharing a brief message: Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps. On behalf of the Independent Advisory Group

📢🎉We are THRILLED to announce the appointment of three new Honorary Fellows to the Institute of Medical Humanities - @dawnw.bsky.social, Chimwemwe Phiri and @kacheston.bsky.social! Find out more about our new Fellows here: mailchi.mp/5fe83a04520c...

An excellent thread on the 'militant ME patients' trope.

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...

Astonished to find not one but two key figures in the medical humanities named on the first page of the MRC file (1988-1997) on ME held at the National Archives - does this cast new light on what the field 'might be capable of doing' (Viney, Callard & @literarti.bsky.social, 2015)?

Hello Bsky #MedHums folk! A quick question: does anyone know of any work on 'narratives about illness'? Hydén (1997) described three types of illness narratives: illness as narrative, narrative about illness, and narrative as illness.