I first heard about the novel coronavirus on New Year’s Eve, 2019 – although the virus was yet to be identified. ProMed, an organisation that sends alerts on disease outbreaks worldwide, sent an urgent request for information about four patients in Wuhan, China, who were being treated for “pneumonia of unknown cause”. The media soon got wind of the story, and from then until the end of February, I spent most of my time being interviewed.
From my previous experience of the Ebola epidemic in West Africa and the cholera epidemic in Haiti, I learned that one of the most important things about managing an outbreak is keeping people calm and ensuring they have accurate information on which they can take action to protect themselves and their families.
As an infectious diseases specialist, I was frequently invited to talk about the new virus on the BBC, Sky, ITV, Al Jazeera and Channel 4 – doing several interviews a day at times. It was all a bit of a blur, but there was one interview that really stuck with me. It was for Radio 4 in late January 2020, and I was on a panel with two other experts. At the end of the session, the presenter asked if we were concerned about the ongoing situation, which at that point was still mostly in China. One of the panellists said they weren’t remotely concerned. The other said they were a bit concerned, but mostly for their elderly relatives.
I remember thinking: I’m pretty concerned, but I don’t feel like I can say it because two people more senior than me said they’re not concerned. So I also said that I was concerned for my elderly relatives, who would appear to be more susceptible to this virus, but added that I was also quite concerned that the NHS could become overwhelmed. I often recall that interview and think, wow, if we knew then what we know now.
And on a personal level, if I knew then what I know now. I would never have imagined that in just a few months I would be suffering from the debilitating effects of long COVID.
A new disease is born
Not long after the World Health Organization declared the COVID-19 outbreak a pandemic in March 2020, people started sharing stories on social media of persistent COVID symptoms – long after their supposed recovery from the disease.
Elisa Perego, an archaeologist at University College London, is believed to have coined the term “long COVID” on May 20 2020 when she used it as a hashtag on Twitter. Scientists didn’t waste any time in coming up with more complex names: post-acute sequelae of SARS-CoV-2 infection, post-acute sequelae of COVID-19 (PASC), post COVID-19 syndrome. But long COVID remains the term that most people use.
The name says it all: it’s COVID-related symptoms that go on for a very long time in some people. And the list of symptoms is long, too: tiredness, headaches, shortness of breath, loss of smell, muscle weakness, fever, racing heart and brain fog, to name a few.
My symptoms are mostly neurological and seem to be related to damage to my spinal cord.
Personal protective equipment
I was infected with SARS-CoV-2, the virus that causes COVID-19, at the hospital in London I was working at. When I saw how easily it was spreading and the limited personal protective equipment (PPE) we had, it felt inevitable that I would get it.
Most of my colleagues came to similar conclusions about themselves. But, because we were relatively young, fit and healthy, we assumed it would be a bit like bad flu – and we would get over it.
We did everything we could to protect ourselves, but it’s apparent now that healthcare workers weren’t protected to the extent they could have been. PPE alone isn’t enough to protect people.
The evidence shows that SARS-CoV-2 can be spread by the airborne route, and touching infected surfaces and objects doesn’t play as big a part in spreading the disease as was initially thought. But when you haven’t got the infrastructure to suddenly change all the ventilation systems in a hospital or increase the size of communal areas, then PPE is what it comes down to.
The level of PPE that workers wear makes a difference. We’ve seen that healthcare workers on intensive care wards are far less likely to get COVID than healthcare workers on regular COVID wards. Because people on regular COVID wards don’t carry out procedures that can result in the release of airborne particles (aerosols) from the respiratory tract, such as inserting or removing breathing tubes in patients, they weren’t given the same level of PPE as their intensive-care colleagues.
Of course, you’ve got to protect people doing these kinds of procedures, but when you’ve got a virus that’s spreading so easily in the community outside, it’s clearly not just these procedures that put people at risk. It’s being close to people who are talking, laughing, coughing, sneezing. I’m a paediatrician, so my patients often scream and cry when I go near them – not because I’m a bad paediatrician; it’s just the way that kids tend to react when a doctor comes near them, especially one wearing a mask.
I’m fairly certain about when I first caught COVID. In March 2020, coronavirus was spreading among the senior team at the hospital I was working at. It pretty rapidly spread down through the consultants to more junior members of the teams.
I was in a small office with a colleague one day when she mentioned that two of the consultants she’d done ward rounds with had tested positive for COVID that week. Neither of us was wearing a mask. At that stage, we only wore a mask when looking after patients on the wards.
That afternoon, my colleague mentioned that she had a sore throat. The following day she tested positive for COVID. Two days later, on March 30, I started to get chills and flu-like symptoms. The rest of the symptoms kicked in the following day.
I was signed off from work and slept solidly for the next five days. After I recovered, I was still a bit breathless, but I returned to work.
I was working on the COVID ward because we were starting to see lots of cases of what is now referred to as multi-system inflammatory syndrome in children – a life-threatening immune reaction to a COVID infection. I picked up my second COVID infection in late May – probably from the ward.
I had almost the same illness again, but slightly milder and without the breathlessness. But there was a new development: I started to get nerve pain in my feet.
At the time, I had a lot of joint and muscle pain, so I assumed it was part of that. After a couple of weeks, all my symptoms settled, but the pain in my feet continued. It was like walking barefoot on a pebble beach. Sometimes it’s OK, although a bit uncomfortable, but now and then you hit a really sharp stone that digs into your foot and makes you go ouch. That’s when I realised I wasn’t able to walk as well as I usually did.
After a couple of weeks of nerve pain in my feet and difficulty walking, I had spasms at night, in my legs first and later in my arms. It was a strange experience.
All of these long COVID symptoms were neurological. The neuropathic pain and the problems with walking are related to damage to my spinal cord that appears to have been caused by the virus.
It was quite difficult to get referred locally, but I read a journal paper that had just been published on neurological symptoms in people with COVID who’d been hospitalised. I took a note of one of the authors’ names: a consultant neurologist called Mike Zandi.
I contacted Dr Zandi at the National Hospital for Neurology and Neurosurgery in Queen’s Square, London, and asked him if he knew of anyone running clinics for people who hadn’t been hospitalised with COVID but had ongoing neurological problems. He said he didn’t, but he’d be glad to see me.
My scans were normal, but a nerve conduction test showed damage to the small nerves in the skin (small fibre neuropathy). And my reflexes were not normal.
During a reflex test, a doctor taps your tendons with a reflex hammer that makes your muscles contract. If your muscles contract more strongly than normal, you are said to have brisk reflexes. Several things can cause brisk reflexes, including multiple sclerosis, Parkinson’s disease and spinal injury.
In September 2020, my symptoms deteriorated. Pain suddenly emerged in my back, in the lumbar region (lower back), but also in my cervical spine (neck area). From that point on, I couldn’t walk more than 200 metres. My bladder and bowel were also affected.
I meet the definition of having myelopathy (damage to the spinal cord), but it’s not clear exactly what kind of damage or what is causing it.
Post-viral problems usually resolve with time, and I’m still hopeful that things will improve, but the further I get from the date of my initial illness, the less likely it seems.
I’ve had physiotherapy, but because things haven’t improved, my doctor is starting to talk about other treatments. However, because they can’t see anything going on in my spinal cord, it’s unclear what to try.
So much we still don’t know
Despite amazing advances in our understanding of SARS-CoV-2 over the past year and a bit, there is still a lot we don’t understand about this virus and the long-term damage it does.
Our understanding of long COVID comes mostly from clinical surveys of people who’ve been hospitalised. However, a recent study showed that a third of people with long COVID weren’t hospitalised with the disease. Researchers are starting to investigate community cases of long COVID now, but there haven’t been any big studies yet.
We need to know if people with long COVID who were hospitalised have the same pathology as those who weren’t hospitalised. For example, we know that many people hospitalised with COVID experience an inflammatory response known as a cytokine storm, which could precipitate many of the problems they experience. But did long COVID sufferers who were well enough to stay at home when they had COVID experience a similar level of cytokine storm, even if they weren’t that unwell with it? Or is it a different pathology that’s happening?
One interesting line of study is autoantibodies – antibodies that attack healthy cells. A few laboratory studies have been investigating their potential role in causing neurological symptoms in patients with COVID.
There have also been some studies looking at people with long COVID and the level of different autoantibodies they have, but they’re fairly small studies and are only in preprint, so have not yet been reviewed by other scientists or published in a journal.
As scientists investigate long COVID further, different subgroups of the disease are likely to be identified, each with different underlying pathology.
Some people with long COVID have specific organ damage, such as the spinal cord, the heart, or the lungs. Others, who have been in intensive care, have problems that are known to be associated with being in an ICU (for any reason), such as post-intensive care nerve damage, lung damage from mechanical ventilation and post-traumatic stress disorder. And then some people have problems with their autonomic nervous system, the part of the nervous system that controls a lot of our organ functions, which is causing them to have very fast heart rates and problems controlling their blood pressure when they stand up. There also seem to be people with new-onset allergies.
There’s probably also a group that predominantly has post-viral fatigue. This group might recover in a few months and may respond well to pacing the amount of exercise and physical and mental activity that they’re doing.
Some people with long COVID might fall into a few of the above categories, but we need to clearly define that. Having done that, we can then look better at the different categories in terms of pathology. And that will lead to us knowing what the better treatment options are for each group.
Answers to these questions are very important, but I can’t put everything on hold until I have them. I need to get on with my life as best I can. I’m a very practical person, so I just think: what do I need to do to get better? And what do I need to modify around my home or in my work practices that mean that I can carry on doing what I do?
I had a bannister put in on my stairwell. I employed a cleaner. And at the end of last year, my local neuro-rehab team brought me a stool for my shower and a frame around the toilet to help me to stand up – practical things to make life a bit easier.
I also plan to sell my car, because my feet can no longer control the pedals, and have a driving assessment to see what type of car I am safe to drive.
Once lockdown has completely lifted and we go back to a more normal way of life, it will be more apparent to me what my limitations are. At the moment, I can’t go for particularly long walks – about two-thirds of a mile – without the aid of crutches.
I was off sick for two to three months in the summer from my clinical job because I couldn’t walk far enough to get to and from work, or do my job on the wards. But in September I rotated back to a research post, and I was able to do that mostly from home. And now I have recently started in a clinical post, doing remote clinics. But I can’t do that forever. I need to return to clinical work on the wards to complete my clinical training at some point, so I’m starting to look into ways that will make that possible.
I’m one of possibly close to a million people in the UK who is going to need help and support to get well and get back to work. NHS England’s £10 million commitment for post-COVID clinics is very welcome, but if you consider the potential number of people affected by long COVID, it’s not nearly enough.
The Office for National Statistics estimates that about 10% of people infected with COVID may have symptoms that last for longer than 12 weeks, and its most recent data suggests nearly 700,000 people in the UK have life-limiting symptoms beyond the 12-week mark. So we’re talking about almost 700,000 people needing some form of investigation and management, and £10 million doesn’t go very far when you try to stretch it among every NHS trust in the UK.
Long COVID is going to be the pandemic that follows the pandemic. Once we have more or less got on top of the acute pandemic situation, it will be with us for many, many years to come.
A stitch in time
Because long COVID is affecting the young to middle-aged adult working population, it directly affects people’s ability to work, the amount of disability support needed, and the amount of resources the NHS will need to diagnose and treat them.
If you consider the number of scans I’ve had in the last nine months and the number of courses of antibiotics for urinary tract infections related to my bladder not functioning properly (I’ve probably had more courses of antibiotics in the last eight months than I have had in the last ten years) and scale that up to nearly 700,000 people, then you can see that it’s going to be a struggle. And it’s not just going to be a burden on the health service, but on the economy as a whole. It doesn’t have to be, though, if we investigate it appropriately now and we try to manage it as promptly as possible.
What I’m pleased to hear is that, following the second wave, general practitioners are much more onboard about long COVID. They’re recognising it in people and diagnosing it much earlier than they did in the first wave.
The sooner we start treating people with appropriate drugs that work, the better. We can help them get back to work sooner and help them recover quicker. If we address it well and manage it well, it doesn’t need to become as big of a burden as it might be.
Nathalie MacDermott receives funding from the NIHR and has previously received funding from the Wellcome Trust.