Sazana Jayadeva

Congratulations Kate - look forward to hearing more!!

After introducing this research project via our past publications, we now start an ongoing thread on a key concept in our work: lay expertise. In the weeks ahead, we’ll present classics and brand-new texts we consider central and relevant – and welcome your comments and suggestions! #layexpertise

“Most People with Long COVID Are Their Own Doctors” by @sazanajayadeva.bsky.social & @dalupton.bsky.social (2025) shows vividly how self-help and self-tracking turn patients into experts for themselves while problematising medical authority.

journals.sagepub.com/doi/10.1177/...

#layexpertise

This is a really interesting article. Well worth reading in full.

It's such a shame that GPs are so resistant to the use of self-tracking technologies, as they could so easily be used to empower their patients to manage their conditions better.

Let's hope things start changing soon on this.

As someone with ME/CFS who has to guard my cognitive exertion, I'm going to be reading the linked article in bits over time, but already want to share it just a little of the way in. So far, really appreciating the clarity, patient respect, and framing.

Long Covid patients gaslit by GPs, Surrey study finds - BBC News The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.

"We urge practitioners to treat patient-generated data as a valuable resource. Without this shift, patients with contested illnesses like long Covid risk remaining stuck in a system where they have to be their own doctors."
Dr Jayadeva

www.bbc.co.uk/news/article...?

#LongCovid #PatientAdvocacy

Long Covid patients gaslit by GPs, Surrey study finds The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.

BBC: “Long Covid patients gaslit by GPs, study finds”

“Dr. Sazana Jayadeva, a research fellow at the university, said a "shift was needed in medical culture" following the findings”

www.bbc.com/news/article...

Long Covid patients gaslit by GPs, Surrey study finds The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.

"Dr Jayadeva, who co-authored the study, added: 'We found that people with #longCovid are often led to fend for themselves in a system that isn't adequately informed about their condition and doesn't offer them appropriate medical support.'"

‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID People living with Long COVID are dealing with significant challenges related to limited understanding of this novel condition, social stigma, and lack of support from medical professionals and oth...

#OutNow in #iCS
Jayadeva and Lupton explore how individuals with Long COVID use self-tracking to understand and manage their illness. Such practices offer empowerment and validation to individuals while challenging power differentials.
doi.org/10.1080/1369...

Sage Journals: Discover world-class research Subscription and open access journals from Sage, the world's leading independent academic publisher.

Study: ‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice.

Published: July 20, 2025

journals.sagepub.com/doi/10.1177/...

Published: 19 August 2025 Patients with Long COVID forced to become their own doctors By Georgie Gould An inability to get the support they need from medical professionals is forcing Long COVID sufferers to navigate and self-manage their illness using digital self-tracking tools and online support groups, according to a new study from the University of Surrey.

"Despite the increasing recognition of Long COVID as a condition, many patients still face dismissal by medical professionals, misattribution of their symptoms to psychological causes, or simply being left to fend for themselves."

Source: www.surrey.ac.uk/news/patient...

News Release 19-Aug-2025 Patients with Long COVID forced to become their own doctors Peer-Reviewed Publication University of Surrey Despite the increasing recognition of Long COVID as a condition, many patients still face dismissal by medical professionals, misattribution of their symptoms to psychological causes, or simply being left to fend for themselves. The study describes the response many encounter from professionals as ‘medical gaslighting’, disbelief and dismissiveness. The study, published in Sociology and conducted in collaboration with Professor Deborah Lupton from the University of New South Wales, Sydney, Australia, found that people with Long COVID are turning to wearable devices and online patient communities to make sense of their symptoms, identify patterns and triggers, and develop their own care plans.

News Release 19-Aug-2025

Patients with #LongCOVID forced to become their own doctors

www.eurekalert.org/news-release...

"participants ... are using data from smartwatches and symptom-tracking apps to evidence their symptoms to their medical practitioners and advocate for diagnostic tests"

#PASC

Self-tracking empowers Long COVID patients amid medical dismissal Despite the increasing recognition of Long COVID as a condition, many patients still face dismissal by medical professionals, misattribution of their symptoms to psychological causes, or simply being ...

'Self-tracking empowers Long COVID patients amid medical dismissal'

'Despite the increasing recognition of Long COVID as a condition, many patients still face dismissal by medical professionals...'

www.news-medical.net/news/2025081...

Denied support, long COVID patients turn to self-tracking and online groups for care Despite the increasing recognition of long COVID as a condition, many patients still face dismissal by medical professionals, misattribution of their symptoms to psychological causes, or simply being ...

University of Surrey: 'Denied support, long COVID patients turn to self-tracking and online groups for care'

'Despite the increasing recognition of long COVID as a condition, many patients still face dismissal by medical professionals...'

medicalxpress.com/news/2025-08...

‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID People living with Long COVID are dealing with significant challenges related to limited understanding of this novel condition, social stigma, and lack of support from medical professionals and oth...

Someone said I'd probably like @dalupton.bsky.social's book Risk, and doing my due diligence, bumped into an interesting #longCovid piece:

www.tandfonline.com/doi/full/10....

Self-tracking empowers Long COVID patients amid medical dismissal Despite the increasing recognition of Long COVID as a condition, many patients still face dismissal by medical professionals, misattribution of their symptoms to psychological causes, or simply being ...

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"We found that people with Long COVID are often left to fend for themselves in a system that isn't adequately informed about their condition and doesn't offer them appropriate medical support":

www.news-medical.net/news/2025081...

Denied support, long COVID patients turn to self-tracking and online groups for care Despite the increasing recognition of long COVID as a condition, many patients still face dismissal by medical professionals, misattribution of their symptoms to psychological causes, or simply being left to fend for themselves.

Many long COVID patients are using wearable devices and online communities to track symptoms, advocate for care, and navigate a healthcare system that often lacks adequate support for their condition. doi.org/g9xj8d

Thanks for sharing it with them!

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice — Sazana Jayadeva and Deborah Lupton "Epistemic justice for people with Long COVID and other contested illnesses will never be fully achieved until the medical profession can develop greater epistemic humility and takes steps to redress testimonial and hermeneutical injustice."

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice by @sazanajayadeva.bsky.social ‪& @dalupton.bsky.social

journals.sagepub.com/doi/10.1177/...

Screenshot from Science for ME weekly update

#LongCovid #PASC

UN agency says staff fainting from hunger as starvation spreads in Gaza Israeli official says Hamas’s latest ceasefire proposal is workable as two sides prepare for talks mediated by Qatar * Middle East crisis – live updates The head of the UN agency for Palestinians has said its staff were fainting from hunger, as the starvation crisis in Gaza resulting from an Israeli blockade on most aid into the territory worsens. “People in Gaza are neither dead nor alive, they are walking corpses,” Philippe Lazzarini, the head of the United Nations Relief and Works Agency (Unrwa) said in a post on X. Continue reading...

UN agency says staff fainting from hunger as starvation spreads in Gaza

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice - Sazana Jayadeva, Deborah Lupton, 2025 This article focuses on the struggles of people with Long COVID to obtain diagnoses and treatment in the face of medical dismissal and ignorance. Drawing on int...

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice journals.sagepub.com/doi/10.1177/...
@dalupton.bsky.social

Me too! Love how these turned out, Ezra is amazing!

Thanks so much @kerstinsailer.bsky.social - so glad you liked it!

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice - Sazana Jayadeva, Deborah Lupton, 2025 This article focuses on the struggles of people with Long COVID to obtain diagnoses and treatment in the face of medical dismissal and ignorance. Drawing on int...

Brilliant new research paper by a friend of mine on the experiences of people with #LongCovid using self tracking devices and peer support in the absence of sufficient answers and help from medical professionals

journals.sagepub.com/doi/10.1177/...

Sage Journals: Discover world-class research Subscription and open access journals from Sage, the world's leading independent academic publisher.

"Epistemic justice for people with Long COVID and other contested illnesses will never be fully achieved until the medical profession can develop greater epistemic humility and takes steps to redress testimonial and hermeneutical injustice":

journals.sagepub.com/doi/10.1177/...

The article is open access and illustrations are by Ezra David Mattes for this project.

May be of interest to: @longcovidsupport.bsky.social @longcovidsos.bsky.social @thesicktimes.bsky.social

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The illustration shows a woman lying in bed, wearing pyjamas and a lab coat. She is trying to make sense of data coming out of her smartwatch.

The illustration shows a woman lying in bed who is wearing a smartwatch. She is surrounded by smaller images of people lying in bed, all wearing smartwatches - there are speech bubbles containing data coming from these people, suggesting that they are speaking about their self-tracking data.

Pleased to share a new article, co-authored with @dalupton.bsky.social, just published in the journal Sociology: '"Most People with Long COVID Are Their Own Doctors": Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice'.

journals.sagepub.com/doi/10.1177/...

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Getting Back on Track: Student Migration From India to Germany as a Route to Desirable Employment - Sazana Jayadeva, 2025 This article examines the rising postgraduate-level student migration of Indian engineers to Germany, drawing on interviews with 42 Indians who were applying to...

Happy to share a new article, just published open access in @socresonline.bsky.social: 'Getting Back on Track: Student Migration From India to Germany as a Route to Desirable Employment'.

journals.sagepub.com/doi/10.1177/...

📖📚 Have you registered for our upcoming ECR RIS reading group?

20 May 2025
3.00-4.30pm BST

✒️ register here: lnkd.in/edviAa_E

@risnetwork.bsky.social @sazanajayadeva.bsky.social

Information, Communication & Society ‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID — Sazana Jayadeva and Deborah Lupton "It is notable that most of our participants had not used self-tracking wearables or apps prior to developing Long COVID. Indeed, some had described themselves as having been opposed to the use of such devices. However, in the absence of adequate medical support, and despite some drawbacks and frustrations, these wearables and apps had become key tools for navigating Long COVID."

‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID

Image is from latest Science for ME weekly update

www.tandfonline.com/doi/abs/10.1...

#LongCovid #PASC