Long COVID continues to cast shadow over millions

With globally accepted estimates of between 65 million and 200 million people sufferers of long COVID, the coronavirus pandemic continues to cast a persistent shadow over us.

Recent scientific studies shed new light on the experience of sufferers, suggesting the longer someone is sick, the lower their chances of making a full recovery.

The best window for recovery is in the first six months after getting COVID-19, with better odds for people whose initial illness was less severe, as well as those who are vaccinated, researchers in the United Kingdom and the United States found in a new study. People whose symptoms last between six months and two years are less likely to fully recover.

For patients who have been struggling for more than two years, the chance of a full recovery "is going to be very slim," said Manoj Sivan, a professor of rehabilitation medicine at the University of Leeds and one of the authors of the findings published in The Lancet.

Sivan said this should be termed "persistent long COVID" and understood like the chronic conditions myalgic encephalomyelitis/chronic fatigue syndrome, or fibromyalgia, which can be features of long COVID or risk factors for it.

Years of impairment

Sivan said between 19.5 million and 60 million people face years of impairment based on accepted estimates of long COVID sufferers.

Long COVID is defined as symptoms persisting for three months or more after the initial infection and involves symptoms including extreme fatigue, brain fog, breathlessness and joint pain.

It can range from mild to utterly disabling, and there are no proven diagnostic tests or treatments, although scientists have made progress on theories about who is at risk and what might cause it.

One British study suggested almost a third of those reporting symptoms at 12 weeks recovered after 12 months. Others, particularly among patients who had been hospitalized, show far lower rates of recovery.

In a study run by the UK's Office for National Statistics, two million people self-reported long COVID symptoms this past March. Roughly 700,000, or 30.6 percent, said they first experienced symptoms at least three years previously.

The United States and some countries like Germany continue to fund long COVID research.

But more money and attention for the condition is dwindling in other wealthy countries that traditionally fund large-scale studies. In low and middle-income countries, it was never there.

"The attention has shifted," said Amitava Banerjee, a professor at University College London who co-leads a large trial of repurposed drugs and rehabilitation programs.

Chronic condition

He believes long COVID should be viewed as a chronic condition that can be treated to improve patients' lives rather than cured, like heart disease or arthritis.

Leticia Soares, 39, from northeast Brazil, was infected in 2020 and has battled intense fatigue and chronic pain ever since. On a good day, she spends five hours out of bed.

When she can work, Soares is a co-lead and researcher at Patient-Led Research Collaborative, an advocacy group involved in a review of long COVID evidence published recently in Nature.

Soares said she believes recovery seldom happens beyond 12 months. Some patients may find their symptoms abate, only to recur, a kind of remission that can be mistaken for recovery, she said.

"It's so profoundly disabling and isolating. You spend every time wondering, 'Am I going to get worse after this?'" she said of her own experience.

Soares takes antihistamines and other commonly available treatments to cope with daily life. Four long COVID specialist doctors in different countries said they prescribe such medicines, which are known to be safe. Some evidence suggests they help.

'Chasing recovery'

Others have less success with mainstream medicine.

Wachuka Gichohi has endured four years of living with long COVID, marked by debilitating fatigue, pain, panic attacks and other symptoms so severe she feared she would die overnight. 

Gichohi's illness was dismissed by her doctor, and she turned to a functional medicine practitioner, who focused on more holistic treatments.

Moving from Nairobi to a small town near Mount Kenya, Gicochi polices her activity levels to prevent fatigue and receives acupuncture and trauma therapy.

She has tried the addiction treatment naltrexone, which has some evidence of benefit for long COVID symptoms, and the controversial anti-parasitic infection drug ivermectin, which does not but which she says helped her.

Gicochi said shifting from "chasing recovery" to living in her new reality was important.

A piecemeal treatment approach is to be expected while research progresses, and perhaps longer-term, said Anita Jain, a long COVID specialist at the World Health Organization.

Meanwhile, long-haulers face a new challenge with each spike in COVID cases. A handful of studies have suggested re-infection can exacerbate existing long COVID.

The global pandemic was declared over in May 2023, but 18 months later COVID-19 shows little sign of disappearing from our lives.