5 years on from the pandemic, 1 in 10 people aren’t sure if they have long COVID

Nearly one in 10 people are uncertain about whether or not they have long COVID, according to a new analysis of survey data that comes five years after the pandemic forced people across the globe to stay at home to prevent the virus’ spread.

Based on a National Health Service (NHS) England survey of more than 750,000 people, the new study also shows that almost one in 20 people have long COVID, which is the name for lasting symptoms of COVID-19.

The chronic post-viral condition includes symptoms such as fatigue, brain fog, dizziness, shortness of breath, and muscle pain.

Those suffering from the condition have said it can lead to severe exhaustion and prevent them from leading normal lives.

The study, which was published on Tuesday in the journal Health Expectations, also found that those living in deprived areas were more likely to have long COVID.

Experts say the study’s findings are in line with other prevalence estimates and added that there could be multiple factors to explain why people are unsure if they have the condition.

“If you are not told that you have long COVID, so if you don't have a clinical diagnosis… then you're likely to be unsure whether it is long COVID,” Nisreen Alwan, a professor of public health at the University of Southampton in the UK and one of the study’s authors, told Euronews Health.

A person saying their health deteriorated after COVID-19, which some may regard as a mild infection, “is quite heavily stigmatised,” Alwan added, which may prevent people from talking about it or seeking diagnosis or support.

What else did the research find?

The authors found that the prevalence of long COVID significantly increased with deprivation.

Several groups were more likely to report having long COVID, including women, parents or carers, people who were gay, lesbian, or bisexual, as well as certain ethnic groups such as White Gypsy and Irish Traveller or those with mixed or multiple ethnic groups, and people with a long-term condition.

Meanwhile, young people, men, those who were heterosexual or non‐binary, and people from other White, Indian, Bangladeshi, Chinese, Black, or Arab backgrounds, as well as former and current smokers, were more likely to be unsure about whether they had long COVID, the authors said.

‘Many have lost their old jobs and lives’

“Five years into this discussion, it [has] never been more important to have strong estimates of caseload and patient burden to support discussions on healthcare planning and medical research needs,” said Danny Altmann, a professor of immunology at Imperial College London who was not involved in the new study.

He added in an email to Euronews Health that “there’s less and less tolerance for any further discussion of COVID-19 legacies and healthcare needs and a call to ‘just move on’”.

A study published in Nature Medicine in 2024 estimated that 400 million people have long COVID globally, with an annual economic impact equivalent to $1 trillion (€954.4 billion).

“Long COVID patient groups around the world are (quite rightly) feeling desperate and let down. Many have lost their old jobs and their old lives,” Altmann said, adding that many longer cases of long COVID are in people who were unable to self-isolate in the early days of the pandemic.

Researchers said the findings show a need for more awareness about the condition among the public and health workers as well as a need for better distribution of diagnosis, treatment, and support.

“Long COVID widens health inequalities, and we need to be very sensitive about that and address how we support people who are more disadvantaged if they have long COVID,” said Alwan, including encouraging them to access support and health services.