“Every medic I saw did their best, but it was all so new; nobody knew anything. I got introduced to graded exercise therapy, to try to improve my fitness, but that just set off a massive crash. The most a long Covid sufferer can do is manage symptoms and pray things get better. Even if things do improve, one activity too many in a day can be debilitating and set you back. It’s like a game of snakes and ladders with one-rung ladders and a whole bunch of snakes.”
Lucy Keighley.
Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover
By Sam Woolaston, The Guardian, 05 June 2024
Article extracts
By the summer of 2022, her mood hit a low point. “I couldn’t see a future that would bring me any satisfaction,” she says. “Suicide ideation plagued me. I’d try to walk to the shop and have to stop to breathe. I can’t carry bags of shopping because carrying a weight and walking is just insanely difficult. And so you’d go to cross a road and you’d think: there’s a lorry, you could just step out in front of that, that would stop all of this. Then the other side says: that’s not fair on the lorry driver.” She worried about her cats, too – who would look after them?
She got mental health support, had some sessions with a psychologist and was prescribed antidepressants. Mentally, she is in a better place now; physically, not so much. “I’m three years in, I’m four stone overweight and do not recognise myself. I feel ashamed when I look in the mirror. Not only do I see someone who’s hideously overweight, I see someone who’s weak. Some of my symptoms have improved, some have gone, but I’ve not had one day of feeling well or normal in all that time. I don’t think I’ll ever recover. I think I’ll just have to learn a new way of life.”
In September, the Guardian published a reader callout asking for long Covid stories. The response was extraordinary: more than 950 people – including Lucy – got in touch, from across the UK and beyond – Germany, Belgium, the US, Mexico, New Zealand. Almost 1,000 people for whom Covid is very much not over.
The symptoms of those who responded could fill pages, although there is a lot of common ground. Fatigue is the main ailment – many of you used to run, row, cycle, do yoga, lift weights and climb mountains. Now, you can no longer walk the dog, cook, work, dance or even get out of bed. Some of you sleep for 12 or 14 hours a day, but others endure brutal insomnia. Some of you now use a wheelchair or a mobility scooter. The fatigue makes you feel as if you have been poisoned, or are experiencing the worst jet lag, or that your battery is flat. It’s hard to describe unless you have experienced it, many of you say – although you all describe it amazingly and powerfully.
The brain fog is overwhelming. You forget people, places, things you have just done. And words. Your vocabulary has become limited; you find it hard to follow conversations, books, films and TV, instructions and directions. Some of you spoke several languages; now, even one is hard. You can no longer draw. Even the simplest music is hard to play on the instrument that you were really, really good at before.
There are more physical symptoms: breathlessness, joint pain, headaches, hair loss, chest pain, palpitations, tachycardia (fast heart rate), hearing loss, tinnitus, vertigo, constipation, diarrhoea, oedema (swelling caused by fluid buildup), hypoxia (low oxygen levels). There are some embarrassing ones, too – your labia are swollen, your testicles ache, your foreskin is sore. Your taste buds have changed in strange, unpleasant ways – mustard now tastes like soap.
You have seen doctors. They have been brilliant and terrible; they have done their best, but without enough knowledge; they have been dismissive and ignorant. You are a doctor. You feel that your GP doesn’t believe you, or even that some of your family don’t believe you; they put it down to anxiety. It’s frustrating, having to convince people that you are not well; you feel gaslit.
You pinned your hopes on the long Covid clinic, but it has been disappointing – just surveys, occupational therapy, breathing exercises and cognitive behavioural therapy. You feel that long Covid has been psychologised. In the clinics, you sit around in a group talking about how to live with fatigue, but you don’t want to live with fatigue. Still, it has been good to meet other people going through the same or similar. A community makes it less lonely. And long Covid is really lonely.
Dr Binita Kane
Dr Binita Kane is a consultant respiratory physician from Manchester with a special interest in long Covid. She worked on the frontline in the city during the acute stage of the pandemic and brought it home. Her 10-year-old daughter, Jasmin, got it, became very unwell and later developed long Covid.
Jasmin didn’t leave the house for a year and missed a lot of school. Kane wasn’t satisfied with some of the advice they were getting, so she consulted doctors in Germany and South Africa who were pioneering new treatments. These helped Jasmin, slowly – over the next two years, she improved. Now 13, Jasmin is at secondary school and about 95% recovered.
This led to Kane specialising in treating long Covid patients, including children. She is able to do this only privately and says there are funding and structural problems that prevent her from doing the work in the NHS.
Kane recognises all the symptoms of the long Covid sufferers who responded to our callout. She says there are “four or five main buckets that people fall into with regard to what’s gone wrong with their systems”.
Blood vessel inflammation is one bucket. Another is autoantibodies, which is “the body starting to make antibodies against itself and attacking itself”. Having an effect on the immune system is another: “One of the things that we see quite a lot is activation of so-called mast cells, so that drives a lot of the allergic-type symptoms and rashes.”
Then there is disorder of the autonomic nervous system, which is “the body’s control centre for all the stuff we don’t have to think about – digestion, breathing, blood pressure, heart rate”. Finally, there is “leaky gut or an imbalance of the good versus bad gut bacteria, which can lead to inflammation in the body and contribute to symptoms”. Some people display features of one bucket, while some have overlapping buckets.
She thinks there are parallels with the way myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, is perceived.
“The ME community have suffered terribly over the years. As a doctor, I look back and I go: gosh, we were almost trained to believe that these conditions are psychological. That’s how we’re taught, because you can’t explain it. Anything that’s unexplained must be in a patient’s head, right? I look back and I go: wow, I was actually part of an infrastructure that taught us this wrongly. Not only do we not treat it, we are taught the wrong things about it.”
Dr Binita Kane.
Now, she is making up for it by spreading the word about long Covid, raising awareness, trying to understand it more and treating patients. With such a huge range of symptoms, treatment options vary, but in short she looks in the buckets and treats “what’s in front of me”…