Long Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it? | Frances Ryan

Imagine a disease that can render its sufferers bedbound for years. One that could take a marathon runner and leave them unable to walk to the toilet. Imagine that at least 2 million people in England and Scotland alone were affected to some degree, each with a mix of debilitating symptoms, from breathlessness to brain fog to multi-organ damage.

Then imagine that there were no proven treatments for this life-changing illness, let alone a cure. In fact, patients are often told it’s all in their heads. Now imagine that more people are falling ill every day with the virus that causes this devastating disability – and that successive governments have abandoned almost every strategy to try to get to grips with it.

There is no need to conjure up such a nightmare, of course – it is already real. Five years after the first coronavirus lockdown, long Covid is in many ways the pandemic’s shadow. While the era of news banners flashing up weekly death tolls on our phones is thankfully a distant memory, vast swathes of people are still living with chronic symptoms years after they were first infected with the virus.

And yet you’d be forgiven for thinking long Covid was old news, a relic of the pandemic past alongside banana bread and clapping for the NHS. When was the last time you heard a politician utter the words “long Covid”? Or saw calls for research or support for sufferers make the front pages? In 2025, long Covid is the public health crisis no one wants to talk about, taking a wrecking ball to people’s lives, the economy and the health service while those with power pretend there’s nothing to see here.

Take treatment. Back in 2020, Boris Johnson’s government promised, to much fanfare, that long Covid patients would receive specialist help at clinics, supported by an additional £10m in local NHS funding. Five years on, there are now more than 90 adult post-Covid services across England to provide diagnosis and rehabilitation for those with long-term symptoms. But data shows only a “fraction” of people with long Covid have actually received help, with a third of them waiting more than three months to be assessed after a GP referral. Recent months have seen long Covid clinics across the country close their doors; NHS Cheshire and Merseyside is the latest to be under threat, with reports it is “no longer financially viable”. It’s no wonder some patients are turning to costly and unproven remedies. When the NHS isn’t helping, desperate people drain their life savings to go abroad for “blood washing”.

Or consider access to disability benefits. A study in the Lancet in 2021 found that 22% of respondents with long Covid were too sick to be in employment, and 45% were on reduced hours. And yet, read news coverage of the growing number of people off work due to long-term illness and you’re lucky to even see a mention of coronavirus – just a cruel complaint about the “soaring welfare bill” and plans to further cut disability benefits.

It’s not like people with long Covid who have kept their jobs are treated any better by the benefits system. In 2023, just 5,224 personal independence payment claimants (paid to those in or out of work) listed long Covid as their main disabling condition – a minuscule amount compared with how many have the condition. That doctors and nurses who developed long Covid saving our lives during lockdown are now reportedly being denied disability benefits gives an insight into how much the state can be trusted to be there in our time of need. Calls for a compensation scheme for key workers with long Covid, you may not be surprised to hear, have also repeatedly been ignored.

Even children are being left to suffer alone. In 2024, more than 110,000 minors aged three to 17 in England and Scotland were estimated to have long Covid, with more than 20,000 of them severely affected. At a time in their lives when they should be running around the playground, these children can barely make it out of bed. Not that you ever hear about coronavirus in the school absence debate. Instead, parents of children with long Covid are threatened with being taken to court for truancy.

The human cost of all this is palpable, of course, but there is a financial toll for the country too. One study estimated long Covid cost the UK economy at least £5.7bn in lost productivity from 2022 to 2023, while some economists calculate that the annual healthcare bill from the disease could be as much as £4.2bn by 2030.

Against this backdrop, you would think ministers would want to curb the spread of coronavirus. After all, the best – and probably, cheapest – way to tackle long Covid is to not catch the virus in the first place. But in 2022, the last official Covid protections were removed, including the end of most free testing. By 2024, the vaccine was severely restricted to only a tiny proportion of the public. That’s despite the fact studies show that if a person has been fully vaccinated and is up to date with their boosters, their risk of long Covid is much lower. This decision has had two major consequences: it has become normalised for the public to be repeatedly infected with Covid and, as such, to increasingly be put in danger of long-term health complications.

When the pandemic rules were lifted, many spoke excitedly of a “return to normal”. The millions of people with long Covid have not had that privilege. While the fortunate recover with time, the worst affected are stuck in their own perpetual lockdown: too sick to go to the pub with a mate or sit in the office for a career they had to quit. As you read this column, more people will be falling ill with an exhaustion and pain that won’t go away. If the dice lands wrong and it is you or someone you love next, you will hope – at the very least – there will be help on the way. That long Covid sufferers know there won’t is not simply the pandemic’s dark shadow, but its mark of shame.

• Frances Ryan is a Guardian columnist

• In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email [email protected] or [email protected]. In the US, you can call or text the National Suicide Prevention Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org