Long Covid is the condition hitting two million Brits after they were diagnosed with the coronavirus. And 400,000 sufferers are still in need of specialist care.
MirrorOnline has written about its access to the UK’s first clinic for the condition suffering from a range of ailments from severe fatigue to brain fog. Many have stopped work as even standing up leaves them gasping for breath.
One sufferer said: “Covid is not over for me. It has completely changed my life.”
MirrorOnline joined medics on the frontline at the country’s first specialist Long Covid clinic. The average age of those being referred is just 45.
But while the virus is declared no longer a health emergency, these patients are left to suffer in silence as the world moves on from the pandemic. Experts estimate around 400,000 have significant disabilities and would benefit from this specialist care.
Long Covid expert Dr Melissa Heightman is head of the pioneering clinic at University College Hospital London in the West End.
She said: “This is a real disease and it’s not some nebulous, imaginary phenomena due to a lack of moral fibre or anxiety. We are working to stop this being a lifelong condition.
"Covid has not gone away. It will be catastrophic for the UK economy if all these people can’t return to work.”
MirrorOnline says it saw patients having checks such as the “stand up sit down” test and were shocked to see how a few simple tasks left them breathless. Patients told us how minor physical activities, such as this trip to the doctor, leaves them bedbound for days.
Dr Heightman added: “Fatigue is the most disabling thing. They are also often affected by cognitive effects such as brain fog, memory problems and multitasking.
“The other common symptoms are muscle and joint aches, headaches and palpitations. This can really affect their ability to be active. The striking thing is patients are quite young.”
One, Michelle King, 46, told how she suffers dementia-style symptoms. She said: “It’s completely changed my life. I’m fed up because I’m not like this.
“People just think about the initial virus and say, ‘I just had a cough.’ They don’t realise how it can stop your life.”
Michelle is one of about 3,000 more patients being referred every month by GPs to more than 100 Long Covid clinics in England. Two-thirds of patients presenting with the syndrome are women, with most of them not requiring hospitalisation with the initial infection.
Dr Heightman’s clinic is the biggest in the UK and was one of the first in the world to start identifying patients with Long Covid three years ago today at the start of the pandemic. Its long waiting room includes doors leading to physiotherapists, psychologists, respiratory physicians, cardiologists and neurologists who each assess the patient.
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MirrorOnline visited on the day mask-wearing became no longer mandatory in hospital clinical settings. The clinic has launched a trial to help understand what is causing the vast array of symptoms that can also include chest pain and depression.
Dr Heightman warned any new variants of the virus, while not as deadly as earlier ones, could still trigger a new wave of Long Covid.
She said: “We don’t know what is going to happen next. It’s getting longer and longer since we had vaccinations.
"If we had a new wave we could see an uplift again in this syndrome. Our ability to keep making progress on this depends very much on research funding.
“With the population’s enthusiasm to think that Covid has gone, we worry we might deprioritise this.”
Dr Kiren Collison, GP and Chair of NHS England’s Long Covid Taskforce, said: “The NHS has now helped over 100,000 people affected by ongoing health issues associated with Covid-19 and we have over 100 specialist clinics across England that can provide a range of support, including care for long-term physical, cognitive and psychological effects.
“If you are concerned about long-lasting symptoms after having Covid-19, please come forward for support – either by getting in touch with your GP surgery or visiting the NHS 'Your Covid Recovery' website for further advice on the support available.”
What is Long Covid?
Long Covid is considered a syndrome, a collection of common symptoms, while what causes them remains a mystery. However, there are five main theories.
One is that a form of Long Covid is an abnormal response of the immune system which could explain fatigue, muscle and joint aches. The second is that it is a disease impacting the nervous system which could explain high heart rates and breathlessness.
Another is that tiny clots could be affecting blood flow. Others are an allergic response or a mitochondrial or muscle dysfunction.
Dr Heightman said: “It’s very clear this virus has different impacts. They could be happening all at once, overlapping and to different extents in different people. So we are unlikely to discover one single drug or treatment.”
Timea’s story
Mum Timea Gere managed to avoid Covid for some time but caught it in December. What followed was an unpleasant illness, although she was not hospitalised.
However, the 47-year-old is now breathless even when sitting and needs to lie down after ordinary tasks such as washing up.
She told MirrorOnline: “I could not have imagined this kind of fatigue. It totally paralyses you.
“This has wreaked havoc with my body. Just after being here at the hospital today, I won’t be able to do anything this evening or tomorrow. I’ll just be in bed.”
The mother-of-four, from Enfield, North London, says climbing stairs leaves her breathless and dizzy. She suffers palpitations when sitting still, and a dry cough which gets worse in the mornings and evenings.
Timea welled up when explaining the impact on her life at home, where she has caring responsibilities for her 10-year-old son, who has Type 1 diabetes and autism.
“He is my priority,” she said. “I feel bad just watching my husband go out to work and him get home and sometimes I’m still in bed. Everything is overwhelming.
“I can’t make decisions easily now. I can’t process things. I can’t recall the names of things.”
Michelle’s story
Mum Michelle King struggles with her short-term memory, often forgetting what she is talking about mid-sentence, and has dementia-like brain fog. Previously outgoing, 46-year-old Michelle now avoids socialising in groups and spends most of her time sitting or lying down.
She told MirrorOnline: “It feels like everything has gone into slow motion. I can’t think. I can remember things from a long time ago but I can be having a conversation and I’ll totally forget what I’m talking about. I can’t find the words.”
Michelle, from Harlow, Essex, worked in advertising for 20 years before setting up her own gardening business. She also cares for her 18-year-old daughter, who has special needs and requires a wheelchair.
Since catching Covid a second time last September, Michelle she has had to close her business and relies on support from her parents at home. Her symptoms include fatigue, breathlessness, palpitations, dizziness, headaches and coughing.
She is shaky when walking and quickly becomes dizzy. On the MirrorOnline visit, Michelle did the sit-stand test, and was exhausted after standing a dozen times.
She said: “Before, I was really sharp and quite fit. Now it just feels like everything is shutting down.”
