It is not often one can say something has genuinely ‘changed the world’ without a modicum of hyperbole yet in the case of COVID-19 it has, with quarantines, social distancing and isolation measures enacted to mitigate the spread of the disease having become the new normal across the globe.

For those who have contracted the virus, the disruption can be devastating both in the short- and long-term, particularly if they have been unfortunate enough to suffer from a constellation of debilitating symptoms over weeks and months.

As COVID-19 spreads, so too does the collective knowledge of the long-term effects of the disease and the difficulties faced by ‘Long COVID’, the long-haulers.  Approximately 10% of COVID-19 cases will go on to experience prolonged illness.

The British Medical Journal defines post-acute COVID-19 (Long COVID) as a continuation of symptoms three weeks from the onset of first symptoms and chronic COVID-19 after 12 weeks of symptoms.

In the early days of the pandemic, a worst-case scenario of a COVID-19 patient would be something like a patient in intensive care, on a ventilator, isolated from their family, gasping their last breath.

Whilst the same exercise for a mild case of COVID may conjure an image of someone with flu-like symptoms, soon to recover in a matter of weeks.

For the long-haulers, they may start with a mild case and instead of the symptoms subsiding, they persist and can persist for months or indefinitely.

Long COVID

According to Professor Paul Garner, for those unfortunate enough to suffer through Long COVID, they are stricken by a diverse constellation of symptoms, of which he can speak from personal experience.

Prof Garner offers a unique perspective on Long COVID as not only is he suffering from it, he is the Director of the Centre for Evidence Synthesis in Global Health at the Liverpool School Tropical Medicine and the Co-ordinating Editor of the Cochrane Infectious Diseases Group, whilst earlier in his career he was an epidemiologist in Papua New Guinea and a doctor in the NHS.

Ironically, Prof Garner’s Long COVID journey began on a teleconference with Dr David Nabarro, one of six Special Envoys to the World Health Organization who are assisting the COVID-19 response.

“During a teleconference with Nabarro he mentioned COVID-19 had a doubling time of three days and anybody who felt a little bit unusual needed to self-isolate. And I thought ‘I don’t feel quite so well’. I didn’t feel dreadfully unwell, didn’t have a temperature, headache or a cough for the first few days and then the illness crept up on me,” Prof Garner said.

Professor Paul Garner

Professor Paul Garner

“Within five days, a sort of emergent headache came and then on day six or seven of being symptomatic, I had absolute utter fatigue, my heart was racing, I thought I had myocarditis, I felt dizzy, sweaty, yet I did not have a temperature.

“I felt I was passing out, I laid down and I actually started passing out on the bed. I thought I’d die, then came around two hours later after this sort of two-hour sleep. I then went through weeks of feeling a bit groggy but not feeling too bad, then suddenly coming out from nowhere, I had the feeling of a cricket bat hitting me around the head and flooring me completely for a day or two and then getting back up again. And this went on for 12 weeks. It just didn’t stop.

“Every time there was a new symptom, it would be deafness one day or pains in my legs and calves or occasionally a bit of a cough other days – I never really knew what I was going to get.

“This was going on at a time when everybody was saying the illness only lasted two weeks and, of course, there was me with all this going on.

“It was extremely frightening as it also messes with your mood. Everybody gets this wrong about mood saying, ‘oh, of course, you’re going to be depressed because you’re unwell, locked up and the world’s going mad outside’.

“I could be almost in tears in the morning with emotion that I didn’t know where it came from, then completely happy and almost manic wanting to go out for a walk in the afternoon. It does mess with your head and people don’t get that.”

Eventually Prof Garner’s symptoms became less severe, though he was left with significant fatigue, which was exacerbated by both physical and mental exertion.

“Early in the illness, around eight weeks, I felt so well. I thought I’d do some exercise and that led to post-exertional malaise – where you push yourself a little bit and feel all right then, bang, within 24 to 48 hours you are flat as a pancake, can’t move, all the symptoms come back for two or three days,” he said.

Anyone and everyone

Co-morbidities, obesity and age are relatively accurate predictors of who may have an acute case of COVID-19, yet this is not the case for Long COVID, according to Professor Danny Altmann, an immunologist at Imperial College London.

He told New Scientist: “There’s clearly something going on here. It is not their imagination or hypochondria. It doesn’t even seem to be linked to how severely they had the disease, as far as I can see.”

Since mid-March, these symptoms have persisted for Prof Garner, who at the time was in his early 60s. He trained regularly and ran between 30-40km a week, with no co-morbidities prior to the onset of symptoms.

“I spoke to doctors who didn’t really know what to say or do, so I got in touch with chronic fatigue and myalgic encephalomyelitis people that I knew, and they were incredibly supportive.

“I spent over three months trying to work out how to control the fatigue, such as how far I could walk, because I was so fit before, I was highly expectant that I could really hammer this disease out. I’ve had viral infections before and just jumped on the stationary bike and trained five minutes one day, ten minutes the next, 20 minutes the next and in a week I’m up and running again.

“During Long COVID, I found out it wasn’t just physical exercise, simply participating in Zoom calls used energy and if I used all this energy and went to bed drained, then I’d be floored sometimes for a couple of days afterwards.

“My head was incredibly muggy because of the headaches and I couldn’t see or read very well.”

Outliers

When the pandemic was emerging, COVID-19 tests in the UK were in limited supply, which meant Prof Garner had to choose between being driven 80km to the nearest testing centre or be admitted to hospital, yet due to the non-critical symptoms, he chose to self-isolate rather than use up a precious test kit that a front line medical worker could have used or the bed of a critical patient.

However, this meant, that in his case and others in his situation were not even considered COVID-19 statistics. It was only when he went to a hospital for a suspected pulmonary embolism that he was tested as negative, further complicating his treatment. He has since taken an antibody test which has come back positive.

“The policy of the UK at the time was to stay home. The only people who got admitted to hospital or even seen were people basically dying, with SATs below 80 or respiratory distress. I probably was very seriously unwell, but didn’t realise or acknowledge it,” he said.

“We’ve got thousands of people already used to self-treating who are not in the system – I am not in any government statistics, so I’m not counted as a case.

“It’s taken me literally six months as a patient to access important information that can help me manage my condition and I’ve done it well as I’ve been banging on about it and people have sent me advice.”

As one of the co-founders of the Cochrane Collaboration, Co-ordinating Editor of the Infectious Diseases Group and the co-ordinator at the Centre for Evidence Synthesis for Global Health, it would be apt to describe him as someone who has dedicated his career to evidence-based research, yet during the worst of his Long COVID experience, he relied on support groups for the most up-to-date information.

“People who had all these symptoms found solace in self-help groups, not their doctors. These self-help groups were usually about two to four weeks ahead of their GPs.

“I had problems with my speech, particularly when I got tired, so I contacted a friend who’s in charge of rehabilitation in a London hospital and she said, ‘get yourself down to casualty, you may be having a stroke, you need an MRI’.

“And I posted these symptoms on a Facebook group, and all of these people said, ‘Oh, God, I’ve been having that for months’. Then I would check in with the chronic fatigue or myalgic encephalomyelitis communities and they would say this is quite common.

“I’m not blaming the doctors, you know. What we need is not well known, but what we need is people to get the message out. These observations are important. Big studies in medical journals will be too late. By the time the medics have completed a longitudinal study, I’ll be either recovered or dead.

“I do think the medical systems for collecting information and disseminating it are not fit for purpose at the moment because things are moving so rapidly, because everything is so new.”

Getting the message out

Prof Garner has unapologetically used his position to disseminate and legitimise Long COVID. While awareness of it is becoming more prevalent, he has heard too many stories of discrimination or outright dismissal by clinicians not to speak up.

“I run the Cochrane Infectious Diseases Group and am known for my work on malaria and TB. I’m able to verbalise things in an accessible way. I have friends who say, ‘if I said what you’re saying, people would just say I’m a 45-year-old non-medical woman and they wouldn’t believe the kind of symptoms I come up with’.

“At my age and, you know, as an old bugger, a white male in infectious diseases, maybe this is what I can do to help by using this position to give this condition some more credibility in these crazy times.

“Things are in such disarray with advice and particularly for somebody like me on the fatigue spectrum and because doctors have denied chronic fatigue and myalgic encephalomyelitis, they think it’s all in your head, so that’s been an additional barrier.

“Then there are people with Long COVID who have dysautonomia syndrome where their autonomic system is going haywire, they have incredibly high heart rates for no apparent reason. One of the symptoms these people have is intermittent tachycardia, and if they do anything about it they are going to their GPs and casualty departments saying, ‘I’ve got a problem with my racing heart’ and these people are being diagnosed as having anxiety.

“I know a psychiatrist who went to a casualty department with these symptoms and the casualty officer said, ‘oh, you’re just anxious about being unwell and it lasting so long.’

Not so mild

When the pandemic emerged the most acute cases were rightfully prioritised for hospitalisation and experimental treatments to reduce symptoms and hopefully bring patients back to recovery, whereas the so-called ‘mild’ cases were thought to recover without the need for intervention.

As the number of hospitalised and non-hospitalised cases have exponentially increased, so too has the understanding that a portion will go on to experience adverse symptoms for months, while the majority of the cases will experience some form of continued symptoms.

For younger people, catching COVID-19 is viewed as a mere inconvenience because the mortality rate is low. Yet the mortality rate does not highlight the actual risks, according to Mary-Louise McLaws, Professor of Epidemiology at the University of New South Wales and a member of the WHO Health Emergencies Program Experts Advisory Panel for Infection Prevention and Control Preparedness, Readiness and Response to COVID-19.

Mary-Louise McLaws, Professor of Epidemiology at the University of New South Wales

Mary-Louise McLaws, Professor of Epidemiology at the University of New South Wales

“From an epidemiological and outbreak management perspective, the 20 to 39-year-olds have represented just more than 40% of all cases. And that’s very disconcerting because while they may have non-hospitalised COVID, I wouldn’t label all of these cases as mild because that undermines their experiences and trivialises their potential for Long COVID,” she said

According to Prof McLaws, people with less severe cases of COVID-19 who were in good health prior to the onset of symptoms may be more aware of the Long COVID symptoms compared with the acute cases where people had prior morbidities or risk factors.

“They may well have not been able to identify the difference between the Long COVID, post-discharge, compared with the very young and fit people recuperating. The non-hospitalised COVID patients recuperating talk about profound fatigue, headaches, diarrhea, palpitations, breathing difficulties and heart problems.

“One of the most important groups who must be protected from Long COVID are the 20 to 39-year-olds, because we wouldn’t want them to go into their middle age having any of these symptoms.

“It has been estimated that symptoms can drag on for more than three weeks in 80% of people and the six-week recovery period is for a group who bounce back rapidly. However, for a lot of people, while they may no longer be infectious, they may not be well enough to consider that they’re back to normal health.”

Mixed messages

The focus on acute cases was exacerbated by the public health messaging, which at the time was focused on reducing the spread of the virus and balancing the demands on the health care system, yet inadvertently minimised the non-hospitalised cases, Prof McLaws said.

“In Australia and overseas we have sent lots of incorrect messages to the community. We’ve used the term mild and that makes people think that they don’t have to worry about COVID, that they’ll just bounce back like they’ve got a mild flu. The authorities have used the rhetoric for not wearing a mask unless you’ve got symptoms, which is only 50% of the real story.

“When the chief medical officer of every state and territory was using that rhetoric, it made me very concerned because we don’t send health care workers onto a ward without a mask and they don’t have symptoms.

“Once you start using rhetoric as if it’s a concrete truth, it’s very hard for leaders to walk that rhetoric back. The rhetoric of a ‘mild’ COVID for the majority disrespects the insidious nature of this disease as a serious issue, particularly for the young who need to get back their quality of life and productivity.

“It also sends a message to the medical fraternity that they may not appreciate the signs and symptoms of post-COVID and may think there’s a different cause rather than it being directly associated with COVID or, for instance, fatigue, because extreme fatigue is sometimes thought of as a mental health issue rather than actually being a part of a post-recovery condition associated with this inflammatory disease.”

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