Patients with Long COVID forced to become their own doctors
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.
The research found that the study participants, most of whom are highly educated and professionally employed (although more than half were unable to work at the time of the interview because of their illness), are using data from smartwatches and symptom-tracking apps to evidence their symptoms to their medical practitioners and advocate for diagnostic tests. In some cases, participants felt it was only because of their self-tracking data that they had been able to get referrals to tests or specialists and subsequently obtain formal diagnoses and access treatment.
Dr Sazana Jayadeva, co-author of the study and Surrey Future Fellow in the Department of Sociology at the University of Surrey, said:
“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. Digital self-tracking, combined with the expertise shared in online patient groups, offers a vital source of knowledge, validation and practical care. But it shouldn’t fall to patients to do this work alone. And not all patients have the resources and capacities to usefully engage with self-tracking technologies and advocate for themselves.”
The study found that online patient groups are not only sharing advice on which metrics to monitor and how to interpret data, but are also contributing to the uptake of self-tracking technologies by people with limited to no previous experience or interest in tracking. The study also found that having wearable data gave patients greater confidence to advocate for themselves in medical contexts. Yet many still felt their data was disregarded or even resented. The study identifies this digital evidence as a tool for reducing the power imbalance between patients and doctors – but only where clinicians are willing to listen.
Dr Sazana Jayadeva continued:
“We need a shift in medical culture, and 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.”
[ENDS]
Note to editors
Dr Sazana Jayadeva is available for interview, please contact mediarelations@surrey.ac.uk to arrange.
This study has been published in the journal of Sociology.
Journal
Sociology
Method of Research
Observational study
Subject of Research
People
Article Title
‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice
Walkable communities lowered mental health stressors during COVID-19 pandemic
University of New Hampshire
DURHAM, N.H.—(August 21, 2025)—Research out of the University of New Hampshire shows that communities that were easier for people to lace up and get out for a walk during the COVID-19 pandemic also helped lower the impact of mental health issues, like stress and anxiety.
“The unknown of the pandemic was difficult but to be able to get outside and simply go for a walk was a salvation for many people,” said Karen Conway, professor of economics at UNH’s Peter T. Paul College of Business and Economics. “In my own family, all my adult children moved home during the pandemic and we must have gone on walks three or four times a day. It was a chance to see other people, we could wave across the street and say, ‘Hey, how’s it going?’ It was definitely a mental thing more than a physical thing.”
In a study recently published in Health Economics, Conway and her co-author Andrea K. Menclova of the University of Canterbury took a closer look at the impact of walking on mental health during the pandemic by analyzing national census and survey data around walkability. They used the Environmental Protection Agency’s 0–20 Walkability Index to measure different communities and found that increasing a neighborhood’s walkability just a little bit — about four points on the index — was associated with a 4% reduction in average pandemic-related mental health deterioration.
For context, neighborhoods that are considered in the low range of walkability have index scores under 6, while the most walkable communities have scores above 15.
The researchers also compared mental health trends before the pandemic (2018–2019) and during it (2020–2021) across more than 55,000 Census tracts nationwide, matching CDC survey data with the EPA Walkability Index. By focusing on differences within the same county, they could isolate the influence of local walkability.
“COVID hit people differently across the country, based on restrictions, deaths, local policies,” said Conway. “We were able to look within a county, where cultural, environmental and other characteristics are pretty similar. But walkability is a very local characteristic that can vary within a county. By making those within-county comparisons, we could see how areas hit by COVID in the same way still experienced different mental health impacts depending on walkability in their neighborhood.”
This positive protective effect of walkability is thought to stem from multiple benefits, including physical activity, more time spent outdoors and improved social ties within neighborhoods. Complementary analysis confirmed that despite a decline in walking for commuting and transportation, walking for leisure increased during the pandemic, largely occurring near people's homes and strongly associated with walkability measures.
While the study focused on the pandemic as the specific stressor, researchers say it points to broader implications for the potential role of walkable communities in lowering the impact of mental health issues and individual-level stressors like grief, divorce, job loss or everyday anxiety. The research also highlights the importance of incorporating walkability into urban planning and infrastructure — like adding sidewalks and traffic calming measures — and public health strategies to improve overall community well-being and health outcomes.
###
The University of New Hampshire inspires innovation and transforms lives in our state, nation and world. More than 16,000 students from 50 states and 87 countries engage with an award-winning faculty in top-ranked programs in business, engineering, law, health and human services, liberal arts and the sciences across more than 200 programs of study. A Carnegie Classification R1 institution, UNH partners with NASA, NOAA, NSF, and NIH, and received over $250 million in competitive external funding in FY24 to further explore and define the frontiers of land, sea and space.
Journal
Health Economics
No comments:
Post a Comment