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Katharine Cheston @kacheston.bsky.social · 1d

An incredibly moving post:

"I have spent the vast majority of my 20s in bed and alone in the darkness and silence"

Screenshot of an article:

"We all have these big ideas about what our 20’s are supposed to look like, how they’re supposed to feel and who we’re supposed to be. I’ve watched through a screen while the majority of people I grew up with have spent their 20s living; been to university, travelled, started careers, fallen in love, had families, bought their own homes, experienced so much.

I have spent the vast majority of my 20s in bed and alone in the darkness and silence
Meanwhile, in my 20s I have had to have my most basic needs seen to by my Mum, my family, my friends, complete strangers. My Mum and I have spent hours upon hours on the phone to Receptionists, Doctors, Nurses, Social Workers and Carers, often begging for help. I have tried countless medications and experienced countless side effects and struggled to manage countless symptoms by myself. I have been unable to speak and unable to feed myself, unable to sit up and unable to stand, unable to cope with the presence of other people and unable to be safely left alone. I have spent the vast majority of my 20s in bed and alone in the darkness and silence, unable to access the outside world and all it has to offer."

Reposted by Katharine Cheston

Action for ME @actionforme.bsky.social · 2d

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

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Katharine Cheston @kacheston.bsky.social · 2d

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 · 2d

Katharine 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...

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.

thepolyphony.org

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Katharine Cheston @kacheston.bsky.social · Aug 19

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…

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Katharine Cheston @kacheston.bsky.social · Aug 18

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…

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Reposted by Katharine Cheston

Prof Danny Altmann @daltmann.bsky.social · Jul 22

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

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Katharine Cheston @kacheston.bsky.social · May 16

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

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Katharine Cheston @kacheston.bsky.social · May 16

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

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Katharine Cheston @kacheston.bsky.social · May 16

Thanks, Carole - it really was.

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Katharine Cheston @kacheston.bsky.social · May 16

Thank you so much, @valerieeliotsmith.bsky.social

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Reposted by Katharine Cheston

Valerie Eliot Smith @valerieeliotsmith.bsky.social · May 16

@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 · May 16

The BMJ has now published my rapid response to Miller et al's Opinion piece.

www.bmj.com/content/389/...

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Katharine Cheston @kacheston.bsky.social · May 16

The BMJ has now published my rapid response to Miller et al's Opinion piece.

www.bmj.com/content/389/...

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Katharine Cheston @kacheston.bsky.social · May 16

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

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Katharine Cheston @kacheston.bsky.social · May 16

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…)

Katharine Cheston @kacheston.bsky.social · May 16

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.

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

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Katharine Cheston @kacheston.bsky.social · May 16

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

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Reposted by Katharine Cheston

Elke Hausmann @drelke.bsky.social · May 15

‚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 · May 15

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…

References

1. Miller, A; Symington, F; Garner, P; Pedersen, M. Patients with severe ME/CFS need hope and expert multidisciplinary care. BMJ 2025;389:r977. doi.org/10.1136/bmj.r977

2. National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. 29 Oct 2021. https://www.nice.org.uk/guidance/ng206

3. Geraghty, K; Hann, M; Kurtev, S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol 2019;24:1318-1333. doi:10.1177/1359105317726152

4. Vink, M; Vink-Niese, A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open 2018;5:2055102918805187. doi:10.1177/2055102918805187

5. Kindlon, T. Do graded activity therapies cause harm in chronic fatigue syndrome? J Health Psychol 2017;22:1146-1154. doi:10.1177/1359105317697323

6. Geraghty, K; Esmail, A. Chronic fatigue syndrome: Is the biopsychosocial model responsible for patient dissatisfaction and harm? Br J Gen Pract 2016;66:437-438. doi:10.3399/bjgp16X686473

7. Cheston, K. (Dis)respect and shame in the context of ‘medically unexplained’ illness. J Eval Clin Pract 2022;28:909–916. doi:10.1111/jep.13740

8. Sharpe, M. Cognitive Behaviour Therapy for Functional Somatic Complaints: The Example ofChronic Fatigue Syndrome. Psychosomatics 1997;38:356-362. doi.org/10.1016/S0033-3182(97)71443-9

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Katharine Cheston @kacheston.bsky.social · May 15

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

bsky.app/profile/kach...

Katharine Cheston @kacheston.bsky.social · May 15

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).

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Katharine Cheston @kacheston.bsky.social · May 15

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.

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Katharine Cheston @kacheston.bsky.social · May 15

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).

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Reposted by Katharine Cheston

Action for ME @actionforme.bsky.social · Apr 28

@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...

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Reposted by Katharine Cheston

The Polyphony @the-polyphony.bsky.social · Apr 24

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

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Katharine Cheston @kacheston.bsky.social · Apr 22

No I missed that one - thanks so much for linking! Wow... the mind boggles. (And going back to your point in an earlier post - this is people's lives. Why is more care not taken by researchers?!)

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Katharine Cheston @kacheston.bsky.social · Apr 22

Yes, absolutely!

And also, be able to sit with not knowing all the answers. Reform what counts as success within academic research - the pressure to publish 'world-leading' outputs surely hinders the ability to say, 'right now, we have no idea, but people who live with it say xyz...'

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Katharine Cheston @kacheston.bsky.social · Apr 22

Oh no need for apologies at all! Totally with you in feeling furious.

I had to trawl through the literature for my PhD. What angered me most was how *bad* it was. Misquoting studies, missing footnotes, unproven claims (etc etc). How can something so mediocre (at best) be so life-changing...?!

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