In It for the Long Haul

AsianScientist – By all accounts, S* was lucky—his COVID-19 symptoms were unremarkably mild. Besides feeling a little tired and out of breath, he did not require any treatment during his mandated 14-day hospital stay. But just a day after being discharged, he noticed something odd: a light workout left him uncharacteristically exhausted.

“I was flat out,” he said. “I couldn’t get out of bed after that.”

The 35-year-old from Malaysia, who used to weight train five times a week, says he had never felt like this before his COVID-19 diagnosis. Even weeks after his official ‘recovery,’ he still finds it hard to get through a full day of work or a short workout session without needing a nap or a cup of coffee.

COVID-19 has a fairly low case-fatality ratio, with 2.4 percent of confirmed patients passing away. But for the majority fortunate enough to survive their bout with the virus, it’s becoming evident that recovery is not necessarily the end of the journey. S*’s experience is a textbook example of something a significant minority of COVID-19 survivors are also facing: the curious phenomenon of symptoms persisting weeks to months after recovery.

The riddled road to recovery

Currently, the World Health Organization (WHO) recommends a time-based criteria for recovery: patients free from fever and respiratory symptoms are considered as recovered ten days from the onset of their illness.

A little over six months into the pandemic, disturbing anecdotes from COVID-19 survivors began to come to light. Even long after they had supposedly recovered, some individuals still suffered from a recurring array of symptoms, including muscle aches, breathlessness, heart palpitations, gastrointestinal disturbances and cognitive disturbances like an inability to concentrate. Across the board, the survivors were consumed by an overwhelming feeling of fatigue.

Still lacking an official name, this phenomenon of persistent COVID-19 symptoms is most frequently termed ‘long-haul COVID-19’ or simply ‘long COVID.’ According to Dr. Nisreen Alwan, an associate professor of public health from the University of Southampton—a COVID long-hauler herself—it may be difficult to investigate the condition’s true prevalence.

Considering that there are over 50 million confirmed recovered cases of COVID-19 worldwide, and many more potentially undiagnosed, at least five million people may be struggling with long COVID. And because the virus is so new, there is little knowledge on what makes one person more likely to develop long COVID—much less how to treat it or how long it lasts.

Currently, data from over four million people on the COVID Symptom Study smartphone app suggests that over 10 percent still have problems a month after recovery, and around one in 50 are still suffering after three months. But as countries seek to boost struggling economies by reopening more industries, COVID long haulers may find it difficult to keep up with the demands of work on top of their own physical battles.

In It for the Long Haul

Paying the physical and psychological price

Until now, there is no definitive answer as to why long COVID persists, though researchers have posited a few possibilities. First, COVID-19 infection has been shown to leave behind lung scarring, which could explain the shortness of breath reported by some recovered patients.

Researchers have also noticed that the symptoms of aches and exhaustion resemble that of post-viral fatigue syndrome. Thought to be caused by the production of inflammatory molecules called cytokines by the immune system, this condition can follow any viral infection, even influenza.

While post-viral fatigue is fairly common and short lived, there seems to be something more insidious at play with the COVID long-haulers. The exhaustion that follows any slight physical or mental exertion, as experienced by S*, is characteristic of another condition known as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). A veritable medical mystery, ME/CFS is a complex and debilitating condition that has no confirmed cause or treatment.

With long COVID, the symptoms could also go beyond the physical. In a long-term study of 233 severe acute respiratory syndrome (SARS) survivors in Hong Kong published in 2009, researchers found that 40.3 percent of participants had reported a chronic fatigue problem, with 27.1 percent meeting the criteria for chronic fatigue syndrome more than three years after infection. At the same time, over 40 percent of the respondents had active psychiatric illnesses, highlighting the psychological price of SARS infection.

For the researchers, these numbers were alarming—and with good reason. Their data showed that psychiatric disorders and fatigue-related conditions in SARS survivors increased after their recovery, regardless of case severity. These post-infection complications were likely to be found among healthcare workers and unemployed individuals, as well as in those who believed in perceived social stigma and needed help from the SARS survivors’ fund.

“SARS patients had long-term respiratory and orthopedic complications that significantly affected their mental health,” study researcher Dr. Marco Lam Ho Bun from the Chinese University of Hong Kong’s department of psychiatry told Asian Scientist Magazine.

Despite this, Lam added that he had not observed as many psychiatric referrals with COVID-19 patients in Hong Kong, possibly due to the differences in severity and treatments between SARS and COVID-19. However, many long-COVID survivors continue to report feelings of frustration and anxiety over their symptoms and a need for emotional support.

Fighting for recognition

For a long time, there was little support for or information about long COVID. Left to make sense of their conditions on their own, the long-haulers organized their own support groups to share their experiences and in the case of one British group, to campaign for recognition. Healthcare professionals like Alwan who have contracted COVID themselves also took matters into their own hands, publishing a manifesto for tackling long COVID.

Thankfully, their efforts have paid off. Healthcare systems are now beginning to recognize the need to address long COVID. For example, the National Health Service (NHS) in the UK has launched an online platform and specialist centers to support and treat patients living with long COVID. Researchers in the UK have also started an observational study following 10,000 COVID-19 survivors for up to 25 years to understand the disease’s long-term effects. Dr. Rafeeq Ruslan, a Malaysian doctor working for the NHS, has seen the benefits of such support and would like to see similar measures taken in Asia.

“I have not read any observational studies regarding the prevalence of long COVID in Asia, but there is growing evidence that long COVID is a distinct condition that could potentially affect 10–20 percent of the population,” he said.

With almost 13 million confirmed recoveries in Asia, there could be at least a million survivors facing long COVID in the region.

“Currently much more attention is paid to public health measures and management of COVID-19 in hospital settings, but consideration should also be placed on treating long COVID with clear management strategies, new clinical guidance and local protocols backed by evidence-based research,” said Ruslan.

Indeed, in an eerily prescient move, Lam and his collaborators concluded their 2009 study of SARS survivors with a warning that the world needed to be better prepared for the next global pandemic and its potential psychological toll.

Mental health services, they wrote, should be available to patients, healthcare workers, and the general public not only during the peak of an infectious outbreak, but also during its aftermath. While these systems and services may not have been in place at the onset of COVID-19, perhaps the pandemic’s harsh memory will finally persuade governments around the world to heed the words of Lam and his team.

The cost of long COVID

Though little is known of its long-term impacts, it is easy to imagine that the debilitating yet largely invisible physical and cognitive impairments of long COVID could result in productivity losses and workplace disruptions. For instance, Lam’s study found that the psychiatric complications that followed SARS infection impaired their ability to work and hold permanent employment.

And for individuals enduring these symptoms on top of the uncertainty of their conditions, the cost is far more personal.

“Right now, I can’t get through a full day of work or play with my daughter without feeling exhausted,” said S*. “Nobody knows how long this will last for. What if it never goes away?” For now, only time will tell. While science has come a long way in unlocking the secrets of COVID-19, there are still many things we don’t understand. With the number of COVID-19 infections rising across the globe—even with the ongoing vaccine rollout—long COVID is quickly becoming one of the most pressing mysteries that needs to be addressed.

This article was first published in the January 2021 print version of Asian Scientist Magazine.

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Disclaimer: This article does not necessarily reflect the views of AsianScientist or its staff.