Katharine Cheston

Fantastic to see this post from our v. own @kacheston.bsky.social on the @thereforme.bsky.social Substack.

If you live with ME or Long Covid with ME symptoms, there is still time to take part in the @actionforme.bsky.social Big Survey (closes 27 Jan)

Take part here: tinyurl.com/2025-Big-Sur...

Thank you so much @thereforme.bsky.social for publishing this post about @actionforme.bsky.social's Big Survey!

The Big Survey is open until 27 January.

If you're yet to fill it out, we would love to hear from you!

www.actionforme.org.uk/research-cam...

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/

2025 Big Survey Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.

🎉 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/...

Privilege and Pain: Why the Medical Humanities Matter Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.

I recently wrote a reflective piece for the Polyphony blog @the-polyphony.bsky.social explaining the motivations behind my work on ME, and what I think a medical humanities approach has to offer this field - and health research more generally

thepolyphony.org/2025/10/09/p...

The aim of this year's Big Survey is to illustrate the impact of ME. I will spend three months in early 2026 analysing the data full-time, and we have big plans to make sure we can get the survey responses in front of new audiences (including clinicians, policy makers, academics).

2025 Big Survey Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.

Find out more (and a link to the Big Survey - including a version for adults and another for children and young people) here: www.actionforme.org.uk/research-cam...

The Big Survey will be open until 27th January 2026

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.

2025 Big Survey Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact 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"

The Action for ME logo appears in the top left corner. Below, white text on a dark background reads: “Register now for the Big Survey 2025, launching next week.” The image includes someone working on a laptop.

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.

Plastic container full of figs

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

I'm really glad to hear this, Sally - thank you for sharing. These harmful beliefs are so insidious, I can really empathise.

I'm sure I'll be able to track it down!

Thanks, Carole - it really was.

Thank you so much, @valerieeliotsmith.bsky.social

@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/...

This is brilliant! Exactly what I was looking (and, in fact, am still looking) for - thank you ever so much for sending it over

Thank you so much, Veronica! 💜 (Also, did you see the reference to dangerous narratives in the final paragraph of the Opinion piece? I didn’t have enough words to address it in my response - perhaps something for another time…)

ALT TEXT PART ONE Beliefs about ME/CFS can shape lives Dear Editor, Last year, I completed a Wellcome-funded PhD exploring women’s experiences of ‘medically unexplained symptoms’ (MUS), a category into which ME/CFS is typically subsumed. During my PhD, I had the privilege of interviewing women living with illnesses including ME/CFS. My interest in ME/CFS is both professional and personal. In September 2008, around my fifteenth birthday, I caught a ‘flu-like virus. My health deteriorated sharply and I was diagnosed with ME/CFS in January 2009; my teenage years and early twenties were shaped by different kinds of formative experiences. In February 2016, I caught another ‘flu-like virus. To my intense and enduring surprise, my ME/CFS symptoms disappeared. They have not returned. While Dr Miller and colleagues argue that ‘[r]eframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS’,[1] my recovery did not involve any of these factors. It simply happened. My health has changed drastically, but my beliefs about the illness and its causes have remained steadfast since 2008. In 2013, after four years unwell and a return to severe illness, I came to believe that I would not recover. This belief did not harm my mental wellbeing, contra to the claims of Dr Miller and colleagues.[1] What did harm my mental wellbeing - to such a significant extent that I have since needed professional support to move forwards - 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. In short, the belief that there was a ‘path’ to recovery (as Dr Miller and colleagues put it),[1] if only I chose to search for it.

ALT TEXT PART TWO The National Institute for Health and Care Excellence (NICE) no longer recommends therapies based on deconditioning and exercise avoidance theories as perpetuating ME/CFS,[2] recognising that these can cause people with ME/CFS to become more severely unwell[3,4,5,6]. Yet my qualitative data illuminates additional harms provoked by these approaches to, and beliefs about, ME/CFS.[7] If the biopsychosocial approach helps someone with ME/CFS to recover (and, with no diagnostic test for ME/CFS, this is arguably a heterogenous patient population) this is undoubtedly a source of both empowerment and comfort, protecting this individual from understandable fears of symptom recurrence. However, there is no limit to how many beliefs you can reframe and to how many unhelpful behaviours you can challenge. I found that this exclusive focus on a patient’s beliefs and behaviours can cause those who remain (or become more) ill to spiral into self-doubt and self-blame, with damaging and corrosive impacts[7]. The enduring belief that ME/CFS is, as one clinician-researcher claimed in 1997, a ‘real but reversible condition that the patient may influence by practical self-help’[8] places an additional burden of suffering of those who remain ill by framing persistent symptoms as personal failure. I speak from both personal and professional experience when I say that the pain this provokes can shape lives. Finally, Dr Miller and colleagues call for a ‘[c]onstructive dialogue between recovered and symptomatic patients’ to ‘help identify practical approaches to recovery’.[1] I see no use in such a dialogue: I do not know why I became ill; I do not know why I recovered. But I do have something to say to symptomatic patients: This is not your fault. Dr Katharine Cheston Mildred Blaxter Postdoctoral Fellow Department of Sociology and Institute for Medical Humanities, Durham University katharine.cheston@durham.ac.uk

ALT TEXT - apologies, part of the alt text had been cut off in the original image/post. I've included it again, in two parts.

Thank you so much for letting me know! Sorry about that - I'll add to the thread and insert it again

‚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

Thanks for drawing my attention to this, Tom. I've submitted a response.

bsky.app/profile/kach...

I normally choose not to share my experiences of ME/CFS; I don't believe that 'recovery narratives' are helpful in these contexts (which is a long story, perhaps for another time).

However, recovery is so frequently mobilised in ways that are harmful, so I wanted to present a different viewpoint.

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).