To the casual observer Stephanie deGiorgio may look like a woman effortlessly spinning a lot of plates. The mother-of-two works part-time as a GP and also regularly addresses large auditoriums of people in her role as a doctor trainer.
‘What people don’t see is that in order to do that talk or cope with a day at work, I need to spend a day in bed beforehand to prepare and two days afterwards to recover because I’m so exhausted,’ says Stephanie, 50, from Dover, who is married to a GP.
Not that long ago Stephanie managed full-time work and packed in sessions with a personal trainer twice a week, as well as a Pilates class, on top of domestic demands – and felt the ‘fittest I have ever been’.
Long Covid changed all that – and six years after developing it, there’s been little improvement for Stephanie.
She caught the virus from a toddler – a patient – in March 2020 and spent two weeks on the sofa feeling unwell.
She struggled back to work after four weeks, but her symptoms worsened – and, on top of fatigue, she developed new problems.
Her heart would race so much walking up the stairs at home she’d have to pause and ‘do it in three chunks’. Standing up made her so dizzy that she often toppled over.
While she persevered working two days a week, ‘after checking with colleagues they were happy I was safe to do so’, she had to give up another role, training doctors online, as ‘anything involving a long time in front of a computer was difficult’.
Stephanie deGiorgio’s youngest daughter Alice was just eight when she caught Covid from her mother
‘All I did was work and sleep – on the rare occasion I went out, I needed three days in bed.’
Today, she still gets dizzy and even mild exertion can cause a bone-deep fatigue that leaves her ‘feeling like I have no power in my body or mind’.
But Stephanie’s composure only crumbles when she details the impact long Covid (defined as symptoms that persist longer than 12 weeks after the infection) has had on her youngest daughter, Alice. She was just eight when she caught Covid from her mother.
‘Alice was very active and loved dancing and gymnastics – she was a bright, sunny child who cheered everyone up,’ recalls Stephanie.
But long Covid has wrung that energy out of Alice, now 14. She experiences dizziness so severe simply sitting up can be troublesome – and has regular, agonising migraines.
‘She spends 70 per cent of her day in bed,’ says Stephanie, sorrowfully. ‘I would give anything to make her better again.’
Long Covid is the forgotten epidemic: according to the Office for National Statistics there are already around two million people in the UK living with it, and the numbers continue to swell as the Covid virus continues to circulate globally: we are stuck with it.
‘Long Covid is not a problem that has gone away, as some people like to think,’ says Danny Altmann, a professor of immunology at Imperial College London.
Mark Faghy, a professor of clinical exercise physiology at Loughborough University, adds that between 2.5 and 10 per cent of people infected with Covid will develop long Covid – and the more you are reinfected, the more your risk increases.
While a third of those affected will recover from long Covid, a third will find ways to adapt their life around their symptoms – and a third will have ‘life as they know it blown to pieces’, says Professor Altmann.
The Office for National Statistics say there are around two million people in the UK living with the condition, and the numbers continue to swell as the Covid virus still circulates
Symptoms include brain fog, breathlessness, joint and muscle pain, and commonly, post-exertion malaise – ‘a flare-up of symptoms following minimal physical, mental or emotional activity’, adds Professor Faghy.
‘For some walking upstairs, having a shower or even the psychological drain of a conversation can trigger a relapse and the after-effects can last weeks.’
Postural tachycardia syndrome (PoTS) – as Stephanie and Alice have – is also common: it causes a racing heartbeat and feeling dizzy on standing or even sitting up. (It’s thought the virus affects how the body responds to feedback from the brain.)
Specialist Covid clinics (first set up in 2020) typically offer only management strategies such as physiotherapy to help with breathlessness and fatigue.
But as understanding of the condition edges forward, several treatments show promise – among them the weight-loss drug tirzepatide (brand name Mounjaro).
And soon the results of the first UK study to test the use of an anti-viral drug as a treatment for long Covid, in this case remdesivir, will be published.
These breakthroughs may not only help those with long Covid, but also hundreds of thousands of others living with ‘long’ symptoms of other viruses – which can be caused by anything from cold and to flu to glandular fever and chickenpox, and even myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Studies have found that around 50 per cent of those with long Covid meet the diagnostic criteria for ME/CFS – and on the back of that, Professor Altmann is heading the Rosetta Stone study which aims to find mechanisms they may have in common, based on blood and stool samples, and mouth swabs, from people with long Covid or ME/CFS.
‘Long Covid is most likely a specific case of ME, we just happen to know the virus that triggered it,’ he says.
What marks long Covid apart from many other post-viral illness has been the fact that, as Professor Faghy says, ‘it can affect every cell in the body with potentially catastrophic impacts’.
Long Covid is not a problem that has gone away, as some people like to think, says Danny Altmann, a professor of immunology at Imperial College London
Studies have found it causes changes in the gut, heart and even the brain.
For example, 2024 research in the journal Brain, Behavior and Immunity found that people with long Covid and ‘clinically meaningful cognitive impairment’ had changes in the thickness in the front part of the brain.
Meanwhile, the trials of antivirals are based on the thinking that some symptoms may be caused by residues of the virus that linger in reservoirs ‘in the gut for example’, says Professor Altmann.
This reservoir may stimulate ongoing inflammation and disrupt the balance of the gut microbes affecting how the immune system, brain and other organs run ‘in ways that contribute to persistent symptoms’, he adds.
In the UK study, which began early last year, 73 patients with long Covid were given a five-day intravenous course of remdesivir.
At this point, Professor Faghy, who is leading the trial, will say only there are ‘positive’ signs (full results are being published later this spring). However, one of the participants, Ryan Cawley, 37, who quit his job in a bank and had to give up playing football, says his ‘breathing feels better, I can do more’ since trying the treatment.
But as encouraging as this might be, Professor Faghy says this drug won’t work for everyone because ‘the main driver of symptoms differs from person to person’.
‘For some this may be remnants of the virus, for others it may be inflammation – or there may be multiple causes at play, each needing different interventions.’
Doctors are also testing treatments that tackle the impact of the lingering inflammation. In a year-long US trial, 1,000 people with long Covid are being given the weight-loss drug tirzepatide, or a placebo. This follows anecdotal reports that long Covid patients taking the drug for other reasons experienced improvements in symptoms – possibly because it reduces inflammation (including around the brain).
As well as better treatments for long Covid, some experts suggest more should be done to highlight prevention. And that includes convalescence post Covid infection. ‘Anecdotally there is a common pattern we see,’ says Professor Altmann.
Mark Faghy, a professor of clinical exercise physiology at Loughborough University, says long Covid can affect every cell in the body with potentially catastrophic impacts
‘And that is people who caught Covid and tried to tough it out – they ignored their symptoms and went jogging or living life as normal – are among those who ended up with long Covid.’
Dr Charles Shepherd, medical adviser and supervisor of research at the ME Association charity – who has lived with ME for 40 years since developing chickenpox in his 20s – says the same applies to ME/CFS.
‘Quite often people carried on at work, doing their home responsibilities and didn’t adequately rest and have a period of convalescence after a virus.’
He says convalescence used to be a big part of recovery, ‘but now it’s hardly ever mentioned in medicine’. He has helped write NICE guidelines advising GPs to suggest that people who have ‘an infection or Covid and [are] not getting over it have a period of rest and convalescence’.
This all comes too late for Stephanie, who feels intense anger at the healthcare system which she says has at times left her feeling ‘ashamed to be part of the same profession’.
While her GP was helpful, they ‘didn’t know anything about long Covid’, she says – and the paediatrician who Alice was referred to questioned whether it was all in her mind ‘even though Alice could barely sit up’.
Stephanie trawled the country for help, and in 2024 found a private long Covid clinic in Liverpool.
‘When we walked in and were listened to, I cried in relief,’ she says. Alice was put on a lengthy list of medications, including fludrocortisone – this helps the kidneys retain fluid to push up her blood pressure to counter PoTS.
‘She is well enough to leave the house about once a fortnight, but she still can’t sit up for huge periods of time,’ says Stephanie.
It’s meant that Alice – who, for 18 months, was too unwell for any schooling – can now manage two hours a week with a home tutor.
‘I look at Alice and I can’t help but worry about what the future holds for her,’ says Stephanie. ‘I can see that my daughter is broken, and yet she has been abandoned by the healthcare system.
‘I have heard of some parents whose child has long Covid who’ve been treated as if there is something a bit weird going on – and parents whose children cannot attend school who’ve been threatened with safeguarding measures.’
Stephanie herself now takes bisoprolol and felodipine to control her PoTS. ‘It hasn’t been miraculous, but helps a bit,’ she says. ‘I sort of muddle through, but it’s nowhere near the life I had.’
She adds: ‘I don’t tell my story to get sympathy – it is because I am so angry about the lack of help. I’m a doctor and even I have struggled: how many families are facing the same difficulties but are unable to find any help at all?’
Professor Altmann fears that there is a lack of political will to help those with long Covid. ‘I used to have good communication with government ministers and advisers [about this] and now I can’t get my voice heard,’ he says.
