Long Covid patients gaslit by GPs, study finds

A University of Surrey study found patients living with long Covid felt dismissed by medical professionals

Patients living with "long Covid" faced "dismissal" and "medical gaslighting" from medical professionals, research has found.

A study by the University of Surrey found participants were relying on data self-gathered from smart watches and phones to track symptoms and advocate for diagnostic tests.

A total of 30 participants, aged between 25 and 62, were recruited from three online long Covid support groups and interviewed about their experiences living with the condition and using self-monitoring practices to track their symptoms.

NHS England has been contacted for comment.

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

Dr Jayadeva, who co-authored the study, added: "We found that people with long Covid 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."

There is no cure for long Covid - and currently no standard test. There are also more than 200 recognised symptoms, the most common being fatigue, breathlessness and brain fog.

Fellows heard that 12 participants had straightforward experiences of obtaining a diagnosis of long Covid based on their symptoms, but others had struggled, "facing gatekeeping from the medical practitioners they consulted".

The latter experience was "especially common" among those who had developed the condition in 2020 rather than in later years, when it was more widely recognised, the study found.

The research was conducted in collaboration with teams from the University of South Wales in Sydney, Australia and received an ethical go-ahead from the Department of Sociology at the University of Cambridge.

Confidence boost

The study also found that online patient groups contributed to "the uptake of self-tracking technologies" and found that having wearable data gave patience "greater confidence to advocate for themselves" in medical settings.

Many participants still felt their data was "disregarded or even resented".

Dr Jayadeva added: "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."

The full study was published in Sociology, a flagship journal for the British Sociological Association.