Today is an anniversary 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 still remains ill.
“It’s been a year since I feel like me,” she said. “It’s been a year since my life, which I knew was coming to an end. 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 twelve hours on films like 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.
He hasn’t swum in months. She spent three months in bed after she fell ill. Changing sheets is a daily job. And she has a brain fog that doesn’t let her go.
Long Covid doesn’t quite describe the depth of her fatigue. “It’s not fatigue. It’s like having jet lag and a hangover. I think I was poisoned, “she said.
The problem for Hencken and the thousands of people who still suffer from the virus a few months later is that Covid doesn’t describe much at all.
The umbrella term includes people who are breathless and tired or have a brain fog, headache and tingling in their hands or have chest pain and palpitations, or all of these and dozens of additional symptoms.
Support groups such as LongCovidSOS are fighting hard to get the condition recognized and taken seriously – sufferers say they feel unfaithful, 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 large studies trying to understand exactly what Covid means, why it affects so many seemingly healthy people and how they can be helped. The University College London study will monitor the health of 60,000 people, including people with long Covid and a control group that will wear a Fitbit bracelet to measure heart rate, breathing and exercise.
The goal is to map and identify clusters of symptoms, said Professor Nishi Chaturvedi. “I think a lot of the symptoms that people report suggest to me and many others that it’s not one, but several syndromes. We are not even at the starting point yet to know what it is, ”she said.
Not only do people have different experiences of long Covid, some, like Chelsie Hoxby, seem to suffer 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, with occasional abdominal pain followed by severe muscle aches six months later, as well as dizziness, weak legs, and back pain.
“What upsets me the most is that I felt better,” she said. “I had Covid, I was pretty bad, but I was getting better. And then in November, all of a sudden, I wasn’t too good. And what’s pretty hard for me is that I think I have a long Covid, but no one has actually confirmed that. “
Hoxby has a referral for the long Covid Clinic at University College London Hospitals, which was the first hospital to start treating patients when it opened the clinic last May. NHS England has now commissioned more than 70 similar clinics.
The clinic started after doctors made further phone calls to people who went to the UCLH emergency service but were good enough to be sent 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 UCLH’s Covid monitoring service.
What started with an ad-hoc service without funding has become a fully-fledged clinic that has admitted more than 1,000 people, with a team from several disciplines, from respiratory specialists to cardiologists, neurologists and physiotherapists.
Experience Heightman and her colleagues considered the long Covid in three broad categories.
“The dominant symptoms in hospitalized patients are fatigue and shortness of breath,” she said. “And we’re starting to recognize different patterns of symptoms in different patients in the background of breathlessness and fatigue.”
Some have neurological symptoms: headaches, migraines, tingling, or weakness in the arms or legs. “And cognition problems, what we call brain fog, multi-tasking problems – it’s like brain fatigue, and overdoing it can create a worse brain fog and worse physical fatigue.”
Another group seems to be focused on the nervous system. “A lot of patients tell us that when they try to be active, they feel a heavy heartbeat, dizziness and sometimes chest pain,” Heightman said, adding that this is associated with standing upright. Some patients responded to beta blockers and a drug for heart inflammation called colchicine, she said.
Patients often do not appear to have obvious damage to the heart, lungs or kidneys, but some appear to have suffered damage to blood vessels in the lungs, she said.
The good news for some long-term patients with Covid is that things are getting better though. “I think there has been a real, real improvement in at least a third of our patients by a month, eight or nine,” Heightman said. “We definitely did not expect to have 12 months and that such a proportion of patients would have so many more severe symptoms.
“For patients with more severe forms of long covid, more than half of those examined at the clinic have symptoms that last up to a year.”