Today is an anniversary that George Hencken had never imagined. It’s exactly one year ago that they took Covid-19. But unlike most people who suffer from the disease, they stay sick.
“It’s been a year since I felt myself,” she said. ‘It’s been a year since my life, as I knew it was coming to an end. And I do not know if I will get it back. ”
Hencken’s life before the virus was that of an archetypal filmmaker: 12 hours a day working on films such as Edgar Wright’s new documentary The Sparks brothers, juggling hundreds of tasks, relaxing by walking and wildly swimming in the rivers at her home in Dorset.
She has not swum for months. She spent three months in bed after she became ill. Changing the leaks is a day job. And she has missing brains that do not let go.
Long Covid does not fully describe the depths of her fatigue. ‘It’s not fatigue. It looks like jet lag and a cat. It feels like I’m poisoned, ‘she said.
The problem for Hencken and the thousands who still suffer from the virus months later is that long Covid does not describe much at all.
The umbrella term treats people who are breathing and tired, or who have missed brains, headaches and tingling arms, or who have chest pains and palpitations, or all those and dozens of other symptoms besides.
Support groups like LongCovidSOS are fighting hard for the condition to be recognized and taken seriously – sufferers say they do not believe them, and doctors initially did not have much information, support or even funding.
Last week, the government announced £ 18.5m through the National Institute for Health Research to fund four major studies trying to understand exactly what Covid means long ago, why it affects so many apparently healthy people, and how they can be helped. Research by University College London will monitor 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, respiration and exercise levels.
The goal is to map and identify clusters of symptoms, said Professor Nishi Chaturvedi. “My sense is that the multitude of symptoms that people report to me and many others suggest that it is not one thing, but several syndromes. We are not even at the starting point to know what it is,” she said.
Not only do people have different experiences of long covid, some, like Chelsie Hoxby, gradually seem to suffer different symptoms. The 37-year-old, a dedicated runner, caught the virus in late January last year.
It started with a cough that lasted for three months and turned into a chest tightness and breathing, with intermittent abdominal pain followed by severe muscle pain six months later, such as dizziness, weak legs and back pain.
“What bothers me the most is that I felt better,” she said. ‘I had Covid, I was pretty bad, but I got better. And then I was in November, all of a sudden, not too good. And what I like pretty much is that I think I have Covid for a long time, but no one has actually confirmed it. “
Hoxby has been referred to a long-run Covid clinic at University College London Hospitals, which was the first hospital to start treating sufferers when the clinic was set up last May. NHS England has now commissioned more than 70 similar clinics.
The clinic began after doctors made follow-up phone calls to people who had been to UCLH’s emergency department but were well enough to be sent home.
“We discovered that four weeks after Covid, about 40% of them still had severe symptoms, and that really surprised us,” said Dr. Melissa Heightman, the clinical lead for UCLH’s Covid follow-up service.
What started as an ad-hoc, unfunded service has become a complete clinic that has seen more than 1,000 people, with a team ranging from various 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 non-hospital patients are fatigue and shortness of breath,” she said. “And we are beginning to recognize different patterns of symptoms in different patients against this background of breathing and fatigue.”
Some have neurological symptoms: headache, migraine, tingling or weakness in their arms or legs. “And problems with knowledge, what we call brain deficiency, problems multi-tasking – it’s like a brain fatigue, and persuasion can make their brain worse and more physically exhausting.”
Another cluster seems to be central to the nervous system. “A lot of our patients tell us that when they try to be active they experience troublesome heart palpitations, dizziness and sometimes chest pain,” Heightman said, adding that this was linked to standing up. Some patients have responded to beta-blockers and a medicine for heart inflammation called colchicine, she said.
Often, patients do not appear to have obvious damage to their heart, lungs or kidneys, but some do appear to have damage to blood fats in the lung, she said.
The good news for some longtime Covid patients is that things are improving. “I think there was a month, eight or nine a real, real improvement in at least a third of our patients,” Heightman said. “We absolutely did not expect to be at 12 months and still have so many severe symptoms for such a proportion of patients.
“For patients with more severe forms of long covid, more than half of them have seen in the clinic symptoms that last up to a year.”