Today is an anniversary that George Hencken never imagined. It is exactly one year since she caught Covid-19. But unlike most people who have suffered from the disease, she remains ill.
“It’s a year since I’ve felt like myself,” she said. “It’s a year since my life as I knew it came to an end. And I don’t know if I’m going to get it back again.”
Hencken’s life before the virus was that of an archetypal movie producer: working 12-hour days on films such as Edgar Wright’s new documentary The Sparks Brothers, juggling a hundred tasks, relaxing by hiking and wild swimming in the rivers near her home in Dorset.
She hasn’t swum for months. She spent three months in bed after getting ill. Changing the sheets is a day’s work. And she has brain fog that won’t let go.
Long Covid doesn’t quite describe the depths of her fatigue. “It’s not tiredness. It’s like having jet lag and a hangover. It feels like I’ve been poisoned,” she said.
The problem for Hencken and the thousands still suffering from the virus months later is that long Covid doesn’t describe much at all.
The umbrella term covers people who are breathless and fatigued, or who have brain fog, headaches and tingling arms, or who have chest pains and heart palpitations, or all of those and dozens more symptoms besides.
Support groups such as LongCovidSOS have been fighting hard for the condition to be recognised and taken seriously – sufferers say they feel disbelieved, and doctors initially had little information, support or even funding.
Last week the government announced £18.5m through the National Institute for Health Research to fund four major studies attempting to understand exactly what long Covid means, why it affects so many apparently healthy people, and how they can be helped. Research by University College London will track the health of 60,000 people, including people with long Covid and a control group who will wear a Fitbit-style wristband to measure heart rate, breathing and exercise levels.
The aim is to chart and identify clusters of symptoms, Professor Nishi Chaturvedi said. “My sense is that the multiplicity of symptoms that people are reporting suggests to me and many others that it’s not one thing, but several syndromes. We’re not even at the starting point yet of knowing what it is,” she said.
Not only do people have different experiences of long Covid, some, like Chelsie Hoxby, seem to suffer progressively different symptoms. The 37-year-old, a dedicated runner, caught the virus at the end of January last year.
It began with a cough that lasted for three months and turned into a chest wheeze and breathlessness, with intermittent stomach pains followed by severe muscle pain six months later, as well as dizziness, weak legs and back pain.
“What upsets me most is that I felt better,” she said. “I had Covid, I was quite poorly, but I was getting better. And then in November, all of a sudden, I wasn’t too good. And what I’m finding quite hard is that I think I’ve got long Covid, but no one’s actually confirmed it.”
Hoxby has a referral to a long Covid clinic at University College London Hospitals, which was the first hospital to begin treating sufferers when it set up the clinic last May. NHS England has now commissioned more than 70 similar clinics.
The clinic began after the physicians made follow-up phone calls to people who had gone to UCLH’s emergency department but had been well enough to be sent home.
“We discovered that four weeks after Covid, about 40% of them still had difficult symptoms, and that really surprised us,” said Dr Melissa Heightman, the clinical lead for UCLH’s Covid follow-up service.
What began with an ad-hoc, unfunded service has become a full-blown clinic which has seen more than 1,000 people, with a team drawn from across several disciplines from respiratory specialists to cardiologists, neurologists and physiotherapists.
The experience has led Heightman and her colleagues to consider long Covid in three broad categories.
“The dominant symptoms in the non-hospitalised patients are fatigue and breathlessness,” she said. “And we’re starting to recognise different patterns of symptoms in different patients against this background of breathlessness and fatigue.”
Some have neurological symptoms: headaches, migraines, tingling or weakness in their arms or legs. “And problems with cognition, what we call brain fog, problems multi-tasking – it’s like a brain fatigue, and overdoing it can give them worse brain fog and worse physical fatigue.”
Another cluster appears to be centred around the nervous system. “Quite a lot of our patients tell us that when they try to be active they experience difficult palpitations, dizziness and sometimes chest pain,” Heightman said, adding that this was linked to standing upright. Some patients have responded to beta blockers and a heart inflammation drug called colchicine, she said.
Often patients appear not to have any obvious damage to their heart, lungs or kidneys but some seem to have sustained damage to blood vessels in the lung, she said.
The good news for some long Covid patients is that things do improve. “I think that there was a real, genuine improvement in at least a third of our patients by month, eight or nine,” Heightman said. “We definitely did not expect to be at 12 months and for such a proportion of patients to still have so many difficult symptoms.
“For patients with more severe forms of long Covid, more than half of them seen at the clinic have symptoms lasting up to a year.”