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Life as a Long-Hauler: What Do We Know About Long COVID?

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Read time: 11 minutes

I first learned about long COVID in August last year while reading an article. Back then, most people’s perspective on the virus was binary. You either lived through it, or you sadly did not. But these reports of long COVID threw some unsettling nuance into the picture. Five months on from their initial infections, many people were still sick. They were still coughing. They were still crippled with fatigue. They were even still experiencing fevers – and there was no sign of them getting better. The virus had changed them for the worse.

It was an unsettling read. Hundreds, maybe even thousands of people worldwide, required urgent care for their confounding condition. Yet most clinicians were at a loss of what care to provide, and many scientists were none the wiser about the condition’s causes.

I felt awfully sorry for those living with this enfeebling disorder, and fearful that I too may somehow develop it. But selfishly, and naively, I at least could comfort myself with the available facts. Many of the people coming forward with their stories were healthcare workers (I was not), who may have received a particularly high viral load of SARS-CoV-2 due to their occupation. Many others had underlying health conditions (I did not), which may have complicated their recovery from the disease. Therefore, I, a relatively healthy 25-year-old, would be fine. Right? I would not only survive a case of COVID-19, but I would come through the other side unaltered and undamaged. Right?

Unfortunately, my theory was tested just a few weeks later, and it was wrong. I did not, and still have not, overcome COVID-19.

In the past nine months since contracting the virus I have had to learn to live with paralyzing fatigue, persistent fevers, fluctuating heart rates, neurological issues which leave me senseless and confused and some gastrointestinal issues it is best we leave undescribed. These symptoms all come and go in a rhythm somewhat linked to exertion, which has been dubbed the “corona-coaster” by the long COVID community. One day I can manage a walk down the street, the next day I am back in bed, too weak to even walk around my flat. I once incurred a sickening two-week-long relapse just from washing the dishes.

I do not mean to dramatize my illness with these descriptions. Compared to many living with long COVID, I appear to be one of the more able. I simply mean to show how one can underestimate long COVID. I certainly did, and it seems most governments still do.

Here in the UK, £10 million has been pledged to fund 70 or so long COVID rehabilitation clinics, but the Office for National Statistics estimates that around 700,000 people in the UK are now living with life-limiting symptoms at least 12 weeks after their initial COVID infection. When stretched over that many patients, £10 million suddenly does not sound like an awful lot.

So, what more can be done? Well, aside from greater funding to health services, research would be a promising start. After all, it is a lot easier to treat an illness when its causes and actions are fully understood. In the UK, £18.5 million has been awarded to four studies that aim to better understand the condition, and many more studies from around the world have already brought the nebulous picture of long COVID into sharper focus. But there is still a long way to go.

Is long COVID caused by dogged viral material that remains in a person’s system long after infection? Or is it an autoimmune disorder, whereby the body’s immune response targets itself rather than the invading virus? And is long COVID one unifying condition or, as some suspect, an umbrella illness for a range of maladies?

The answers to these questions are far from agreed upon. But new research could change that and give clinicians the data they need to inform treatments, and sufferers the hope they need for a quicker return to normal life.

Long COVID research

“There’s a lot of people [with long COVID],” Dr Elaine Maxwell says. "It’s a big enough problem that we need to take it seriously. So, people are starting to look back at what causes it, but we can’t wait three or four years until we understand that to offer treatment.”

Maxwell is a clinical adviser at the UK’s National Institute for Health Research (NIHR), a government agency that funds healthcare research. In light of the pandemic, her recent focus has been researching and collating the existing evidence for long COVID, a role which has since produced two groundbreaking reviews. The first was published last October and mainly consisted of patient testimonies. The second, released in March, was a review of the existing scientific literature around long COVID. Distilling over 300 papers into one document, Maxwell’s report is one of the strongest resources available for understanding the science behind long COVID. So what did it find?

How common is long COVID?

Well, to start with, it documented the prevalence of the condition. It appears that at least 10% of those infected with COVID-19 experience at least one symptom for 12 weeks or longer. A significant proportion of these sufferers seem to retain their symptoms for at least six months, and many still report ongoing complications a year after their initial infection.

These figures may change as more data comes in. As Maxwell notes in her review, many long-haulers (as they are sometimes known) could have had their condition overlooked by medical professionals and their symptoms attributed to other illnesses.

“I’m quite concerned about older people who get it,” Maxwell says, “Because older people who get long COVID are often put down [as], ‘Well, it’s just a sign of aging.’ Older people are more likely to have preexisting conditions, so they’ll often be told, ‘Well, it’s a deterioration of that'.”

“I think the current estimate of people still having symptoms at six months may prove to be a very low bottom estimate,” she adds.

Who is at risk of long COVID?

What is clearer at this stage is who is more likely to be affected by long COVID: women. In one patient survey included in the NIHR review, 81% of respondents were female.

The reasons for this apparently dramatic effect of gender aren’t yet clear. Some researchers have theorized that a survivor-effect may have warped the sex ratio of long-haulers; men are more likely to die from acute COVID-19. Therefore, the theory goes, men will be more absent from the long COVID population. But other ideas point to the known differences in immune responses between men and women.

“We know that there are chromosomal differences in immune responses,” Maxwell says. “Biological sex affects your immunology, in particular your T-cell response. So, some immunologists have theories that the reason it’s more prevalent in women is because of this different T-cell response.”

This theory proposes that women are more likely to have an overactive immune response, which leads to continued inflammatory reaction and long COVID symptoms such as fatigue. Indeed, many autoimmune diseases, such as arthritis, are more common in women than men.

Aside from their gender, many of these affected women had one more thing in common: their profession.

“The occupational group most likely to have long COVID are health care workers,” Maxwell says. “So we’ve got this perfect storm [regarding long COVID rehabilitation services].”

However, while long COVID could be considered an occupational hazard, it does not exclusively affect those in proximity to patients with acute COVID-19. Counterintuitively even, young, otherwise healthy people also seem to be an at-risk demographic. In one survey conducted by the NIHR, the majority of respondents – 67% – were aged between 25 and 54. Although, as mentioned, it can’t yet be ruled out that many older people with long COVID are having their condition confused with an existing illness.

Ethnicity, however, does not appear to be a factor in developing the chronic health condition – yet. One study from the US found no differences between ethnicities in overall rates of long COVID symptoms, although the authors acknowledged that the sample size of non-white ethnicities was limited.

“The big study in America was looking at patient records, so it was one of the insurance companies,” Maxwell says. “In America, you’re more likely to be uninsured if you’re from a certain minority ethnic group. So, I think everybody is quite nervous about saying anything because the data seems to show that there’s no risk, or no additional risk. But it may be a sampling issue.”

What are the symptoms of long COVID?

Listing the number of symptoms of long COVID is not a quick count. According to one influential pre-print study from 2020, the condition has 205 different symptoms related to 10 different organ systems. Of course, no long-hauler could actually display 205 symptoms at once. Instead, the condition seems to manifest slightly differently in different people, and even change as times goes on.

According to an Italian follow-up study of patients admitted to hospital with acute COVID-19, some of the most common persisting symptoms included shortness of breath, joint pain, chest pain, a continuous cough and Sjögren's syndrome, an autoimmune condition that causes dry eyes, a dry mouth and rashes.

But it seems the most common symptom is fatigue. Now – and I am writing from experience here – long COVID fatigue is not just a sense of tiredness; it is a crippling vacuum of energy. Imagine staying awake for 72 hours and then being poisoned; it is that kind of fatigue – one so tiring it actually becomes painful. Many sufferers remain in bed for weeks, powerless to get up for any length of time. 

For those unfortunate enough to live with this fatigue for months, it is a real shock to the system. But, for the medical community, it should not have been too surprising that COVID-19 would come with such an ongoing debilitating symptom. This kind of post-viral fatigue is actually a well noted after-effect following certain infections. The Spanish flu of 1918, for instance, left in its wake a score of nervous disorders so severe they are now thought to have contributed to a famine in Tanzania; because so many of the agricultural workers were left with post-viral fatigue, the crops were never picked. The symptom has also been seen in modern pandemics. In 2009, a follow-up study of 233 patients with severe acute respiratory syndrome (SARS) in Hong Kong showed that 40% met the criteria for chronic fatigue syndrome at four months, and 27% for longer than six months.

In fact, post-viral fatigue is such a standard illness that some researchers believe it should sit apart from long COVID as a tangent condition.

“I think a lot of those people [have] got post-viral fatigue,” says Maxwell. “And I personally don’t think they should be included in long COVID. I think it hinders our understanding and also hinders the people who’ve got long-term symptoms, to just put everybody in that category.”

To better reflect the scope of long COVID conditions, says Maxwell, it may be best to categorize patients into different groups depending on their kind of ongoing illness. But what would these categories look like?

Are there multiple types of long COVID?

Front and center in her first long COVID report for the NIHR, Maxwell proposed that the condition could well be a number of distinct syndromes, including post-intensive care syndrome, post-viral fatigue syndrome and long-term COVID syndrome. Since then, several other papers have concurred with the idea. One systematic review even proposed four sub-categories: symptoms continuing from the acute phase of COVID-19, symptoms causing a new health condition, late onset symptoms appearing as a consequence of the disease and the impact of a pre-existing health condition or disability.

However many sub-conditions there are, it seems pertinent on researchers and clinicians to agree on the different definitions, so patients can receive more tailored support and treatment.

“We thought, ‘Well, there’s a number of different things going on here’,” Maxwell continues. “And it’s probably not helpful to put them all under one umbrella term.”

“Chris Whitty [the chief medical officer for England] endorsed it and said, ‘Yeah, I think it’s a number of differences as well.’ But [the theory] has not always been popular. Lots of medical staff have criticized me for saying it is a number of different syndromes. [There are] lots of polarized opinions about what it is or it isn’t and I’m just trying to be an honest broker in the middle saying, ‘This is what the evidence says'.”

What causes long COVID?

Now for the million-dollar question: why are these awful illnesses happening? What actually causes long COVID? Well, we do not know, but scientists have ideas.

One hypothesis is that small amounts of viral material remain in the body after the initial infection and continue to trigger the body’s immune system. Such viral reservoirs have been documented in other diseases, such as the Ebola virus, which can linger in the eyes – a hard-to-reach area for white blood cells.

Another theory proposes the same kind of over-stimulation from the immune system, only without any viral reservoirs. Instead, the idea goes, it is the initial infection that was so overwhelming that the body’s immune system has been altered and now targets its own cells rather than any invading virus. These rogue antibodies then go on to attack specific proteins in organs such as the heart, causing inflammation and debilitating damage. Indeed, a study from July 2020 found that 78% of people who were followed up around ten weeks after hospital discharge had abnormalities visible on cardiovascular magnetic resonance imaging and 60% had ongoing myocardial inflammation.

It is not yet known why long-haulers might be more susceptible to such auto-immune conditions, while most people infected with COVID-19 recover within weeks. As mentioned, there is the gender factor, but there may also be a genetic link. Certain people, for instance, are known to have a gene that codes for the protein HLA-DRB1, which helps the immune system distinguish the body's own proteins from proteins made by foreign invaders. An absence of this gene or a similar one may help explain the prevalence of long COVID, but a study involving such an investigation has yet to be published.

How can long COVID be treated?

Of course, it is difficult to know how to treat long COVID when research has only begun to scratch the surface of the condition, but a few rehabilitation paths look promising. According to one paper from last year, long-haulers should ideally have a functional medical assessment and those with post-intensive care syndrome should receive psychological, physical and cognitive rehabilitation.

Failing such a medical evaluation, there is some emerging research to suggest that breathing exercises can help reduce the breathlessness seen in many patients. And although exercise can trigger relapses in many long COVID patients, a new study from NIHR found that short periods of physical activity over six weeks could actually help rehabilitate some patients. As such, the choice of whether to start a graded exercise program or not perhaps should be down to the individual patient and their advising clinician.

“Exercise tolerance/intolerance should not be seen as binary concept,” Maxwell writes in her second long COVID review for the NIHR. “A better term might be ‘symptom-titrated physical activity.’ Using the term physical activity instead of exercise therapy also highlights the need to think about exercise as part of a person’s day-to-day life and the need to pace all activity.”

Indeed, pacing is key when it comes to managing long COVID. Given how punishing normal activities can be when living with the post-viral illness, it is vital long-haulers vigilantly manage their energy, being careful not to expend too much at a time (I myself currently live within an “exercise envelope” of around 3,000 steps a day). The hope is that by sticking to such strict limits, the body of a long-hauler will have more energy to build back its former strength over the coming months and years.

Beyond this level of patience, long COVID sufferers need support. Many need psychological support to help them cope with feelings of anxiety and depression, and many need financial help now that they are physically unable to work. In one NIHR survey, 36% of respondents with long COVID said their symptoms had affected their financial status.

“It looks like that for some people, this is going to be a long-term condition,” Maxwell says. “I’m not saying they won't ever be cured. But a substantial number of people have already been ill for over a year. There isn’t going to be a magic cure, or there isn’t going to be [a] drug that’s going to cure it.”

“It might be about health coaching,” she continues. “Okay, so I have got this condition. How can I learn to pace myself? How can I negotiate with my employers a return to work but on a reduced schedule? What signs and red flags do I need to look out for in case I’ve got new symptoms?’ So, it’s about managing the condition as well as treating it.”

The scope of the long COVID challenge is vast and one that perhaps no country is currently prepared for. The onus on health care systems to support hundreds of thousands of sufferers, while many healthcare workers are off ill themselves with long COVID, is gargantuan; the physical and mental toll of the millions now living with long COVID is indescribable.

Within this dismaying scene is at least one silver lining: scientific research has responded with vigor. While similar post-viral illnesses and chronic fatigue syndromes have often been under-investigated in the past, the sheer scale of the long COVID crisis has awakened an urgency in post-viral research. Hundreds of papers have already been written and hundreds more studies are already underway. Hopefully, with this level of scientific attention, a more informed understanding of the condition will soon emerge. And with that in hand, a set of thorough recovery plans for patients could soon follow.

“In research team terms, we’re working at warp speed,” Maxwell says. “I mean, normally, we faff about, put out a call, give people months to think about writing a research proposal […] then assess them and get the money out. That’s being done at speeds never seen in research before.”

“We’re expecting people to publish their initial findings within six months,” she adds, “Whereas normally it takes five-to-six years for a big research study to publish anything. So, I know it does not feel fast if you’ve got long COVID. But in research terms, it is very fast.”