Richard Campbell had a demanding job as a consultant rheumatologist in a busy London trust at the start of the year.
In his scant spare time, he enjoyed an active social life, went to the gym several times a week, and had a particular interest in creating complex electronic music, sometimes involving up to 50 separate sounds.
When he developed symptoms of COVID-19 towards the end of March, he thought it would be a short period of feeling awful, then back to his old life. But six months later, he is still suffering – and has yet to return to work, let alone anything else.
‘I had been looking after probably COVID-19 patients, and working on the medical take where I saw lots of COVID-19 patients,’ explains Dr Campbell, 44.
‘I wasn’t severely unwell enough to need to go into hospital, but I was unwell at home for two to three weeks. I had fever and severe myalgia, and very severe headaches, loss of taste and smell, severe vertigo where it felt I was constantly falling backwards, and severe tiredness. Interestingly, I never had any respiratory symptoms – I never had a cough and was never short of breath.
‘I expected to be unwell for two or three weeks with a flu-like illness and get better and go back to work. In fact, I pushed myself and went back to work after three weeks, before my symptoms had subsided. I think a lot of doctors are used to being able to push themselves through difficulties, and that’s what I tried to do – but I probably shouldn’t have. I was trying to do clinics with my head on the table in between seeing patients. Eventually I realised I needed to take some time off to recover.’
Dr Campbell is one of a growing number of doctors reporting continuing symptoms several weeks and months after contracting COVID-19 – a phenomenon usually called ‘long COVID’. Often affecting young, previously fit and healthy individuals, leaving them with debilitating symptoms with life-changing effects, long COVID is emerging as a serious yet largely unforeseen consequence of the pandemic.
According to Amy Small (pictured, top), a GP in East Lothian, who is campaigning for better recognition of long COVID, there is understandably little in the way of resources either for doctors who are suffering or for the medical professionals they are turning to for help. She is part of a long COVID Facebook group specifically for doctors in the UK, which has more than 350 members, most of whom still have symptoms, or who have even developed further problems, such as serious heart conditions, in the aftermath of COVID-19.
‘The group is very helpful,’ she says. ‘It’s a mixture of mutual support, mostly around symptoms and how to navigate the NHS with these symptoms; how to navigate the private sector and so on. But there is also discussion about contractual stuff, because people are having issues with employers and other things to do with being off sick.
‘Some of us are trying to put together some educational resources on long COVID – but the problem is that we’re all knackered. One of our ideas is to create some information sheets for GPs and others who may be coming across long COVID, and also information for GPs to give to patients. I think some GPs don’t have much understanding of long COVID – there’s one poor girl whose GP refuses to write COVID on her sick line because she never had a positive test, which is causing her problems with her locum insurance.’
I was trying to do clinics with my head on the table in between seeing patientsRichard Campbell
Dr Small contracted COVID in April, and, like Dr Campbell, thought she would soon bounce back and return to work. When she attempted to do so, however, even trying to do some simple administration tasks meant she had to go back to bed for days.
‘I’ve still got a fever after five months,’ she says. ‘The symptoms don’t seem to be going away. Last week I tried going into the sea at North Berwick because I had heard cold water could be helpful. I managed five minutes the first time, and it felt really good, but then I built it up to 10 minutes, which was a mistake. When I got out of the water I felt everything draining from my body. I was dizzy, breathless, really tired, had brain fog, couldn’t find words. It was utterly draining.’
Her own GP has been helpful and sympathetic, she says, but not everyone has found NHS services so understanding. For example, Kerry Smith, a salaried GP in Chichester, has spent around £3,500 of her own money on an MRI and other investigations, and a private consultation with a cardiologist, having hit a brick wall with local health services. The private tests revealed a variety of conditions, including angina, positional orthostatic tachycardia syndrome, and mild tricuspid and mitral regurgitation.
‘My consultant says it’s all sequelae of COVID-19 and he has seen quite a few cases,’ she says. ‘I am to be referred to Charing Cross Hospital urgently so that he can continue my care.’
She believes she contracted COVID-19 after seeing a patient who had recently returned from China.
‘The patient had been back for two weeks, so the guidelines at the time were that we would see them in the surgery. She had a temperature and a cough.
‘I’m a very thorough GP, so of course I was very close to her – and six days later I developed symptoms myself. I was quite a fit person – I thought it would just be a nasty viral infection and I’d get better. But that hasn’t been the case.’
Dr Smith paid for private tests after finding local health services unresponsive. At one point, when her GP sent her to emergency care she went through a battery of tests but was told everything was normal and sent home. ‘I burst into tears – I was at my wits’ end; I felt nobody believed me,’ she says. ‘People don’t seem to believe what’s happening because they can’t see it in front of them and that’s the thing I’ve struggled with the most.’
David Strain, co-chair of the BMA medical academic staff committee, is researching long COVID as part of his work as a senior clinical lecturer at the University of Exeter Medical School. He is also taking a leading role in much of the BMA’s work on COVID-19 more generally – and says that there needs to be much more recognition of its lasting effect on people’s health.
‘There are very few figures on how common [long COVID is]. If you go on Facebook, even in the UK, there are 25,000 to 35,000 people claiming some degree of symptoms, although it’s hard to tease out how much of this is due to long COVID.
‘We got some really good data out of the sequential survey that the BMA has been doing with doctors, which asked some questions about long COVID. We had 5,650 people answer the question about whether they’d had COVID, and of that, 12 per cent have had a positive test, and 16 per cent believe they’ve had it but didn’t have a test because it was early on and tests weren’t available. Of those who reported having COVID, just under 30 per cent said they’d been left with physical fatigue, generalised shortness of breath, and about 18 per cent – 270 people – had been left with the brain fog and memory loss and generalised difficulty in concentrating.’
Around a fifth had taken additional sick leave and 10 per cent had taken annual leave to give themselves more time before returning to work, he adds. ‘So around 30 per cent of doctors were affected beyond the acute COVID.’ This in itself is significant, he says, because doctors are less likely than other professions to take sick leave.
‘Even if this next outbreak takes just the same percentage of doctors, we’re looking at huge numbers of people off sick, not just for the [acute] COVID and the quarantine period, but with prolonged symptoms. And all of the people I’ve seen with this have been young – they’ve been under 45. That’s something that really needs to be hammered home to the 20-somethings and 30-somethings that are still going out for nights on the town because they think that even if they do get it, they’re not going to be really affected – because they are the people that are getting this long COVID syndrome.’
I thought it would just be a nasty viral infection and I’d get betterKerry Smith
The BMA has been helping individuals with contractual, sick pay and other employment issues concerning this, he adds, and is also working to ensure long COVID is seen as a consequence of COVID and is therefore considered an occupational health issue.
More research is needed, he says, including into similarities with chronic fatigue syndrome, as well as awareness-raising about the public health implications.
Abbey Ordys, a salaried GP in Midlothian, became ill with COVID-19 at the end of April, and is one of the younger doctors affected. Aged 33, she previously enjoyed a busy working and social life, with a particular interest in yoga, baking and crafting. Today, she says, she spends an awful lot of time napping.
‘At the start of week two I suddenly felt very unwell with postural tachycardia, chest pains, terrible feeling and ended up in the medical assessment unit. I had basic tests which were reassuring – my oxygen level was OK and bloods were OK, so I continued to recover at home. I expected I would just recover over a week or so. But it became increasingly obvious that this wasn’t a standard viral illness; it had become something a lot more.’
At the end of week three, she tried to go back to work. ‘I managed about two hours before I realised I was just not firing on any cylinders and couldn’t work safely.
‘Since then, it’s been this ongoing saga of things not getting better. There’s been days when I’ve felt reasonable and been able to put on a pair of trainers and walk round the block. There have been days and weeks when I’ve just felt awful and spent all day in bed. The symptoms that have really dragged on have been fatigue – I’m a doctor and I don’t think I really understood what fatigue was until I experienced it, a feeling of just being like your whole body is drowning in treacle, inside and out, and you can’t make your body or your mind function. I’m somebody who, with my job, is used to having a hundred thoughts and making a hundred decisions at any one moment, and I was finding it impossible even to watch Netflix or listen to music. I was just staring into space.’
All four doctors The Doctor spoke to for this article said they had learned from the experience of people with ME/CFS – particularly around the need to ‘pace’ rather than attempt graded exercise. It has also improved their understanding of this group of patients. ‘I think I was always sympathetic – now I can be empathetic,’ says Dr Ordys.
Dr Campbell has made a lot of progress but is still far from well. ‘I’ve been building up gradually. I had been trying to exercise but I found that exercise made me worse, so I’ve been adopting more of a pacing approach to my symptoms, so when I feel they’re coming on, I stop and rest.’
Today, he has headaches, nausea, and difficulty with any tasks that require cognitive endurance or periods of focus – which are particularly worrying for him because of the nature of his work. He also feels that because he contracted COVID-19 so early, it is impossible to know how long it will take to recover fully because there are few comparators.
‘Previous to COVID-19 I had an extremely busy job, I had a very active social life and I was exercising at the gym two or three times a week. The worry that I won’t be able to go back to doing that concerns me.’