Today is an anniversary that George Hencken never imagined. It has been exactly one year since she captured Covid-19. But unlike most people who have suffered from the disease, she remains ill.
“It’s been a year since I feel like myself,” she said. “It’s been a year since my life ended. And I don’t know if I’ll get it back again. “
Hencken’s life before the virus was the life of an archetypal film producer: he worked 12 hours after films like Edgar Wright’s new documentary The Sparks Brothers, juggling a hundred tasks, relaxing with hiking and wild swimming in the rivers near her home in Dorset.
He hasn’t swum in months. She spent three months in bed after falling ill. Changing sheets is a daily job. And she has a brain fog that doesn’t let her.
Long Covid does not describe the depth of her fatigue. “It’s not fatigue. As if they had a reactive lag and a cat. I feel like I’ve been poisoned, “she said.
The problem with Henckan and the thousands who still suffer from the virus months later is that Covid doesn’t describe much for long.
The umbrella term covers people who are out of breath and fatigue or have brain fog, headaches and tingling in their hands or have chest pain and heart palpitations, or all of these and dozens of other symptoms.
Support groups such as LongCovidSOS have worked hard to identify the condition and take it seriously – they suffer from feeling distrusted, and doctors initially had little information, support or even funding.
Last week, the government, through the National Institutes of Health Research, announced £ 18.5 million to fund four major studies to understand exactly what Covid means for a long time, why it affects so many seemingly healthy people and how they can be helped. The University College London survey will track the health of 60,000 people, including people with long Covid and a control group wearing a Fitbit-shaped bracelet to measure heart rate, respiration and movement.
The goal is to map out and identify groups of symptoms, said Professor Nishi Chaturvedi. “I think the more symptoms that people report to me and many others show that it’s 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 with long Covid, some, like Chelsie Hoxby, seem to have gradually different symptoms. The 37-year-old, a dedicated runner, caught the virus in late January last year.
It began with a cough that lasted three months and turned into wheezing and shortness of breath, occasional abdominal pain followed half a year later by severe muscle pain as well 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 was getting better. And then all of a sudden in November I wasn’t too good. And what I find pretty difficult is that I think I’ve had Covid for a long time, but no one has actually confirmed it. “
Hoxby has a referral for the long Covid clinic at University College London Hospital, which was the first hospital to start treating patients when it set up the clinic last May. The NHS England has now commissioned more than 70 similar clinics.
The clinic started when doctors continued to make phone calls to people who went to the UCLH emergency room but were good enough to send them home.
“We found that four weeks after Covid, about 40% of them still had severe symptoms and that really surprised us,” said Dr. Melissa Heightman, clinical head of the Covid Monitoring Service at UCLH.
Starting with an ad hoc, unfunded service, it became a complete clinic with more than 1,000 people, a team made up of several disciplines from respiratory specialists to cardiologists, neurologists and physiotherapists.
Because of the experience, Heightman and her colleagues considered the long Covid in three broad categories.
“The predominant symptoms in non-hospitalized hospitals are fatigue and shortness of breath,” she said. “And we’re starting to recognize different patterns of symptoms in different patients in terms of shortness of breath and fatigue.”
Some have neurological symptoms: headaches, migraines, tingling, or weakness in the arms or legs. “And cognition problems, what we call brain fog, multitasking problems – it’s like brain fatigue and overdoing it can worsen brain fog and worsen physical fatigue.”
Another set seems to be focused on the nervous system. “A lot of our patients tell us that when they try to be active, they feel palpitations, dizziness, and sometimes chest pain,” Heightman said, adding that this is related to an upright condition. Some patients have responded to beta-blockers and a heart inflammation drug called colchicine, she said.
Patients often do not appear to have obvious damage to their heart, lungs or kidneys, but some appear to have suffered damage to blood vessels in their lungs, she said.
The good news for some long-term patients with Covid is that things are getting better. “I think there’s been a real, real improvement in at least a third of our patients by a month, eight or nine,” Heightman said. “We certainly did not expect to be at 12 months and that such a proportion of patients would still have so many severe symptoms.
“In patients with more severe forms of long covid, more than half of the patients in the clinic have symptoms lasting up to a year.”