Katharine Cheston
@kacheston.bsky.social
Researching “the greatest medical scandal of the 21st century”. Infection-Associated Chronic Illness, activism, stigma, medical humanities. Postdoctoral fellow in Sociology.
As ever, this is a beautiful, thought-provoking piece - thank you, Naomi.
Naomi Whittingham@naomiwhitt.bsky.social · 7d agoI realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.
Please join us this coming Monday (12-1.30pm) for a free seminar on ‘Gender, Affective Injustice and “the Greatest Medical Scandal of the 21st Century”’. www.durham.ac.uk/research/ins... I’ll showcase some initial analysis of the 2025 Big Survey @actionforme.bsky.social @durhamimh.bsky.social
Gender, affective injustice & ‘the greatest medical scandal of the 21st century' - Durham University
durham.ac.uk
Thank you so much for sharing, @tessamunt.bsky.social I'm really looking forward to sharing more on Monday 11th May (12.00-13.30 BST). You can join us (for free) via Zoom www.eventbrite.co.uk/e/gender-aff... @durhamimh.bsky.social @vpatton.bsky.social @literarti.bsky.social
Gender, affective injustice & ‘the greatest medical scandal of the 21st c.'
Katharine Cheston discusses the treatment of people with ME and its wider implications in terms of affective injustice in healthcare.
eventbrite.co.uk
Tessa Munt MP 🔶@tessamunt.bsky.social · 4mo agoInitial results from the Big Survey of >5000 pwME are deeply disturbing… disbelief by NHS healthcare professionals, made to feel their ME was their fault, traumatic encounters with clinicians. This can not continue. More on 11 May👇🏽. Thanks @kacheston.bsky.social and @actionforme.bsky.social.
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...
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.
tinyurl.com
ThereForME@thereforme.bsky.social · 7mo agoOur #ThereForME blog is back! Today, Dr Katharine Cheston writes about her collaboration with @actionforme.bsky.social on the 2025 Big Survey. Katharine explains why large-scale charity surveys are so important for ME research and treatment, and how you can get involved. Link in next post 👇
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...
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.
actionforme.org.uk
ThereForME@thereforme.bsky.social · 7mo agoOur #ThereForME blog is back! Today, Dr Katharine Cheston writes about her collaboration with @actionforme.bsky.social on the 2025 Big Survey. Katharine explains why large-scale charity surveys are so important for ME research and treatment, and how you can get involved. Link in next post 👇
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 🧵
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.
tinyurl.com
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.
Action for ME@actionforme.bsky.social · 10mo agoOur 2025 Big Survey is now open! 🎉 For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/ Thank you for supporting our research💙 🤝in collaboration with @durhamimh.bsky.social @kacheston.bsky.social
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
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.
actionforme.org.uk
An incredibly moving post: "I have spent the vast majority of my 20s in bed and alone in the darkness and silence"
Tom Kindlon@tomkindlon.bsky.social · 10mo ago"I still desperately want to live" A woman who is turning 30 who has spent the last decade living with severe ME reflects on her life meglobalchronicle.wordpress.com/2023/12/23/i... #SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social
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.
The Polyphony @the-polyphony.bsky.social · 10mo agoKatharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research. thepolyphony.org/2025/10/09/p...
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...
Katharine Cheston@kacheston.bsky.social · last yr.The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/...
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
Katharine Cheston@kacheston.bsky.social · last yr.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).
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).
![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.
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] recognisin…](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tfndvthrcq3sux7rpoz5beef/bafkreieqlzwmnerovslptiot6af6fxam2xpf4dzxrs64ec5ifxcflesy3u)
The BMJ@bmj.com · last yr.Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects around 250 000 people in the UK. Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, @paulgarnerwoof.bsky.social and colleagues www.bmj.com/content/389/...
@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...
Practice Research and Chronic Illness: ‘Fatigue Questionnaires’
Alec Finlay explores medical fatigue questionnaires through ‘subversion by means of soft poetics’.
thepolyphony.org
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.
Michiel@murtoz.bsky.social · last yr.Brilliant new initiative from some of the foremost #MECFS researchers in the UK, proposing 5 biomedical research hubs, 5 years of funding, in order to start finally getting some justice for #pwME and #LongCovid. Please sign here: organise.network/s/5fe85dfdc26e to show your support, & share widely!
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.'
ThereForME@thereforme.bsky.social · last yr.🚀 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-...
Med Hums 101: What is Medical Humanities?
The Polyphony is delighted to launch the publication of a new brochure – MedHums 101: What is medical humanities?
tinyurl.com
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... ...
Independent Advisory Group: Comment on the Cochrane exercise review
Today, the Independent Advisory Group (IAG) submitted the comment below on the Cochrane exercise and CFS review to The Cochrane Library. If/when it is published, we will add the link to this post. …
hbprojecttalk.wordpress.com
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...
Two arrested as Newbury's stolen Paddington statue recovered
The sculpture was damaged and taken from his seat in Paddington creator Michael Bond's home town.
bbc.co.uk
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 📧 kathryn.bromwich@observer.co.uk #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.
Independent Advisory Group Open Letter to Cochrane
Today, the Independent Advisory Group (IAG) sent the letter below to the Chair of the Cochrane Collaboration’s Governing Board, as well as members of the Governing Board, the Executive Leader…
hbprojecttalk.wordpress.com
Hilda Bastian@hildabast.bsky.social · 2y agoI never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day: absolutelymaybe.plos.org/2025/01/24/w... #mecfs