Millions May Have Long COVID – So Why Can’t They Get Diagnosed?

Millions of people in England may be living with Long Covid without even realizing it.

A large-scale analysis found that nearly 10% suspect they might have the condition but remain uncertain, often due to lack of diagnosis, stigma, or self-doubt.

Many Are Unsure If They Have Long Covid

Nearly one in ten people (9.1%) in England suspect they may have Long Covid but are unsure, according to a new analysis of NHS England survey data conducted by the University of Southampton.

Researchers also found that 4.8% of respondents reported having Long Covid, with higher rates among individuals from disadvantaged backgrounds, certain ethnic groups, parents or caregivers, and those with existing long-term health conditions.

The study, published today (March 18) in the journal Health Expectations, highlights ongoing disparities in how Long Covid affects different populations.

The Unfair Burden of Long Covid

Professor Nisreen A. Alwan, a leading Long Covid researcher and co-author of the study, emphasized the disproportionate impact of the condition.

“This analysis adds further evidence of the unfairness of Long Covid, with people who are already disadvantaged in society more likely to be affected.

“It also shows us that many people aren’t sure if they have it, and may need diagnosis, treatment, and support.

“Long Covid is still a very significant issue impacting individuals, families, the economy and wider society. We need to do more to prevent it, diagnose it, and properly support people who are affected by it.”

A Widespread Yet Uncertain Condition

Long Covid is a chronic condition induced by COVID-19 infection that can have a significant impact on people’s daily lives. Symptoms include fatigue, feeling short of breath, ‘brain fog’, and heart palpitations, amongst many others.

University of Southampton researchers analysed over 750,000 responses to the GP Patient Survey (England) 2023 to explore the prevalence of Long Covid, and the factors associated with both having the condition and being uncertain of having it.

Why Some People Stay Undiagnosed

They found that people aged under 25 years, males, people from particular ethnic minorities, and people without long-term conditions were more likely to be unsure if they had Long Covid.

Men are generally less likely to seek medical advice than women, which could partly explain their higher level of uncertainty. The team also says stigma and self-doubt could discourage people from seeking a diagnosis.

Raising Awareness and Bridging Gaps

Mirembe Woodrow, who is studying for a PhD at Southampton and who carried out the analysis, said: “We were really surprised to find so many people weren’t sure whether they had Long Covid or not, and the study shows there is still work to do to increase awareness of the condition and remove barriers to accessing diagnosis, treatment, and support.

“We don’t want Long Covid to be another factor that contributes to the widening health gap in the UK.”

Long Covid Uncertainty Persists

The most recent data from the 2024 GP Patient Survey indicates Long Covid prevalence and uncertainty are not declining (5.0% and 9.0%). Professor Alwan’s team intends to carry out further work using the survey to understand what could be driving inequality in prevalence, impact, and support for Long Covid.

Reference: “Exploring Long Covid prevalence and patient uncertainty by sociodemographic characteristics using GP Patient Survey data” 17 March 2025, Health Expectations.
DOI: 10.1111/hex.70202