It’s day 182 after being infected by Covid-19, and Charlie Russell is not doing the things that other 27-year-olds are doing.
He’s not running 5km three times a week like he used to. He’s not going to the pub. He’s not working. And he’s not getting better.
“If I had known that I’d be this ill, I would have taken everything a lot more seriously back in March,” Russell said. “But all that we heard back then was that if you were infected and you were a young person, you’d most likely not have any symptoms at all. Or you’d be ill for a couple of weeks and that would be it.”
Instead, Russell has suffered from chest pains, excruciating migraines, severe breathlessness, dizziness and exhaustion, one of the legions of “long Covid” sufferers who have experienced long-term symptoms from the coronavirus.
Record numbers of people in their 20s are testing positive for covid-19, according to the latest figures from Public Health England, which showed 3,366 had the virus in the first week of September.
That is higher than the 3,325 cases at the end of April, although those tests were mostly conducted on people in hospitals. Although people under 40 face a much lower risk of dying from the illness, 20-somethings like Russell are catching covid-19 in far higher numbers than other age groups: 20- to 29-year-olds make up nearly 28% of all new infections.
Few will need hospital treatment, but long-Covid support groups and medical experts fear that a significant minority will end up with a severely debilitating condition that scientists do not yet understand.
“We’ve got this terrific emphasis at the moment on the idea that younger people will be OK and the main reason they shouldn’t go out is because they might infect their grannies,” said Charles Shepherd, medical adviser to the ME Association which supports people with myalgic encephalomyelitis or chronic fatigue syndrome. The association has seen substantial numbers of long-Covid patients turning to it for support.
“There is a risk that if younger people catch the disease, they may not end up in hospital but they could have an illness that leaves them exhausted with post-Covid syndrome. It’s not going to happen to the majority, but there is a real risk for a significant minority,” Shepherd said.
About 600,000 people have some sort of post-Covid illness, according to Tim Spector, professor of genetic epidemiology at King’s College London, who says that around 12% of sufferers report symptoms to the Covid Tracker app for longer than 30 days. One in 200 says the effects last for more than 90 days.
Russell, who is a photographer specialising in theatre, has not worked since he fell ill. He is precise about the date: 14 March. “I’ve had plenty of time to look back and think, what was I doing then? And how I wished I hadn’t been doing that.”
His illness lasted two weeks and he felt better not long afterwards, then experienced terrifying chest pains “like someone was sitting on me”. But hospital doctors and his GP said tests showed there were no problems – a common experience of long-Covid patients, according to Frances Simpson, a founder of the support group Long Covid SOS, who says many struggle to have their symptoms taken seriously by the medical profession.
Russell was luckier than most – he changed GP, and the new doctor ordered an antibody test which confirmed he had had the virus. He is now one of 500 patients taking part in the Coverscan clinical trial into the impact of Covid-19.
“When people refuse to wear masks or to even obey the most basic of social distance rules, it’s very, very frustrating,” Russell said. “I just want to shake them and say ‘I’ve been living with this for six months’.
“I think a lot of young people – and it’s human nature – think that if something doesn’t affect you directly, it almost doesn’t exist. Friends of mine who are still going out to the pubs, still going out to dinners and not really taking it that seriously. I do worry for them.”
Russell was in good condition before the virus hit, with his regular 5km runs timed at about 23 minutes. Now he struggles to climb stairs.
Long Covid SOS and other groups say that their members receive little help and there is little recognition of the condition. They want the government to formally recognise the long -term impact of the virus, provide financial support for those unable to work because of long Covid and establish multidisciplinary clinics to help assess and treat patients.
Research has only recently begun into the long-term effects of Covid-19, but Shepherd said the working theory was that the coronavirus had disrupted people’s immune systems, causing a cytokine storm, or an overreaction of the body’s protective system, which is thought to also be a factor in ME and chronic fatigue syndrome.
“Several studies in the last two or three years show that immune system dysfunction is probably involved in ME,” he said. The immune system seems to continue to activate on a low level, trying to fight off a virus that is no longer there. That reaction may then affect the central nervous system and the hypothalamus.
If post-Covid fatigue and ME are linked, research may provide solutions to both conditions. It has been difficult to study ME since most people with the condition have lived with it for months – if a virus was involved, it has left little trace by the time researchers meet their patient.
“This is the first time you can follow people almost from day one. Researchers are building large cohorts, they have got blood samples, and they can follow patients almost from the point of infection to when they develop post-viral fatigue. We’ve never had the opportunity to do that before.”