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We’re swiftly learning the symptoms of Covid-19 may last longer than previously thought. One in 10 people are reporting a longer tail of symptoms, which exceeds the suggested two-week recovery time. 

It’s thought around 30,000 people in the UK could be impacted by a prolonged version of the illness – what some are calling ‘long Covid’. These people are months into their recovery from the virus and still fighting a range of persistent symptoms. In some cases, the symptoms disappear for a while before coming back. In others, they’re gradually improving over time. 

Research from the Covid-19 Symptom Study in the UK, led by Professor Tim Spector of King’s College London, shows after three weeks of first reporting symptoms, a group of people continue to experience fatigue, headaches, coughs, loss of smell, sore throats, delirium, and chest pain. 

People with mild cases of the disease are more likely to have a wide range of symptoms that come and go over an extended period, Prof Spector found. And these people are often flying under the radar because they’re not in hospital.

Those who believe they’ve had ‘long Covid’ – which isn’t a medical term, rather a description of what they’re experiencing – are now calling on the government to recognise their plight, invest in research and put support in place.

When was ‘long Covid’ first recognised?

The issue of ‘long Covid’ came to light when Professor Paul Garner, an expert in global health at the Liverpool School of Tropical Medicine, wrote about what he heavily suspects was Covid-19 – he suffered weeks of ill health and exhaustion as a result. 

“Sometimes I felt better and became optimistic,” he wrote of his fatigue in the British Medical Journal, “but then the next day I felt as though someone had hit me around the head with a cricket bat.”

Dr Jake Suett, an intensive care medicine (ICM) doctor, has been unwell with suspected Covid-19 for 13 weeks. As a doctor, he feels a responsibility to bring ‘long Covid’ to the attention of politicians, as well as medical and scientific communities. He first became unwell with what he suspects was the virus in March, but still hasn’t properly recovered, meaning he hasn’t returned to work. 

“I’ve been unwell with symptoms consistent with Covid-19 and I wasn’t tested until the fourth week, so it’s hard for me to say 100% that’s what has happened to me, but I certainly recognise the symptoms I had are consistent with it and obviously I was dealing with it closely [in intensive care],” he tells HuffPost UK. 

“I was taking a long time to recover and I saw Paul Garner’s article in the BMJ and realised this was happening to other people as well. I decided to join one of the support groups that Paul Garner mentioned in his article and realised there were probably thousands of us – all having very similar stories and many of the same patterns of some people having quite serious symptoms that could represent other pathology [illness] or could be complications from Covid-19.”

Has there been much research into it?

A poll from the Netherlands paints a picture of how many might be struggling. Almost three months after the first symptoms of the virus, more than nine in 10 people reported having problems with simple daily activities. And 85% of respondents said their health was good before the virus, falling to 6% afterwards.

Of the 1,622 people with suspected coronavirus who took part in the survey, conducted by Longfonds (a lung foundation in the Netherlands), 91% hadn’t been hospitalised, and 43% hadn’t been diagnosed by a doctor. Common long-term symptoms included fatigue, shortness of breath, chest pressure, headache and muscle pain.

“We are really shocked by this,” said Michael Rutgers, director of the lung foundation. “It is the first time this large patient group has been visualised. These people really need to be seen, heard and helped.”

He warned there’s an “invisible group of patients” who are in danger of falling between the cracks amid the coronavirus pandemic: “We have to prevent that.”

So how many people are suffering?

In the UK, there are thought to be tens of thousands of people who, like Dr Suett and Professor Garner, have struggled over the past few months with little support. Due to widespread testing not being in place until April in the UK, many who came down with the virus in March can’t know for sure if they had coronavirus or not – despite their symptoms fitting the bill.

Some have been told by doctors the issue is psychosomatic, where physical symptoms are brought on by stress and anxiety. Many have turned to the internet for advice, relying on vitamins, supplements, pain medication and sharing tips and tricks, to see them through.

People have flocked to Facebook and Twitter to join #LongCovid support groups and share their experiences. Many say they were fit and healthy before, and can now barely exercise or exert themselves months after becoming ill. Despite this, they’re forced to return to work while feeling fatigued, breathless and suffering from brain fog.

Dr Suett is calling for a UK study into the long-term impact of Covid-19. “We haven’t really got, from what I can see, any comprehensive data on what recovery from Covid-19 looks like,” he says. 

“We’ve got a bit of a signal from the Tim Spector Covid-19 study, but I’m not aware of anything that anyone is actually doing to follow that up in a more objective way and draw all that information together.”

What needs to happen next?

Dr Suett wants health professionals to be educated on the long-term issues that Covid-19 patients might face and has urged people to write to their MPs to demand government action. There needs to be a study of patients experiencing prolonged symptoms with a view to investigating possible treatments, he says.

As it stands, there’s little research into this and people don’t know if their long-term symptoms are occurring because they’re still infected with the virus – one Chinese study reported details of a patient with mild Covid-19 who was shedding the virus for 49 days – or if the continuing symptoms are the result of something else. For example, long-term damage to the lungs or heart, or an autoimmune condition triggered by the virus. 

“It needs to be recognised as an issue, taken seriously, and studied further,” Dr Suett continues. “If someone has a symptom that’s shortness of breath, they need to be able to access investigations to make sure it’s not something else that’s causing it. Or, if it is Covid-19, they need to be seen so we can build up this picture of what it causes and how the recovery looks.”