Long COVID-19 is on the march: can it be stopped?

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Early in the pandemic it became clear that COVID-19 could extend beyond the initial infection. Awareness was boosted in May last year when a professor of infectious disease shared his experience of seven weeks on a “rollercoaster of ill health” following infection.

His account appeared in the British Medical Journal, BMJOpinion, and spread through #LongCovid on Twitter. Since then, long COVID has become a recognised term in scientific literature and studies about it have been piling up.

With stories proliferating in the lay press and social media too, there’s now enough popular information to provide sobering lessons for people who made the decision not to be vaccinated. Some who have been infected will be suffering from long COVID and lamenting that decision. They’d be wondering when they’ll return to full health.

So, will long COVID eventually peter out?

I see a gradual improvement in our patients, but there’s a sort of relapsing, remitting component.

Gail Matthews, professor and head of the Kirby Institute’s Therapeutic Research and Vaccine Program

“I don’t know the answer to that,” says Matthews, who leads the ADAPT study that has been following patients diagnosed with COVID-19 since April last year, at St Vincents Hospital where she is head of infectious diseases.

Blood tests are taken to measure patients’ immune responses and samples go into a research biobank so collaborators may use them too. ADAPT collaborates with the Kirby, the Garvan and other institutes too.

“We still haven’t got people who are two years out from having COVID. Maybe it all goes away at two years, maybe three years. Anecdotally, I see a gradual improvement in our patients, but there’s a sort of relapsing, remitting component. Certainly some of our cohort are fully recovered. It’s too early to know whether everybody will get better.”

She was struck by how some people who were fit and healthy and not badly affected by their initial infection, didn’t recover quickly.

“We seemed to miss seeing something that COVID was triggering in the immune system, preventing these people returning to full health.”

Researchers from the Kirby and the ADAPT study, have started to look at the cells of people recovering from COVID-19 and have discovered evidence of immunological disturbances that can persist for up to eight months.

These novel findings are currently under review for publication and should add insights into why some people may get long COVID.

But, they’re only a small part of the search to understand the virus’ immunological signature and only a great amount of collaboration with other institutes and other disciples will progress the journey.

“The immune system is incredibly complex, like a huge machine, it has many different components that turn on other bits and turn off other bits. Picking apart these pieces takes time and far more than one group to come up with an answer. Once we start having some insights, maybe there’s be a possibility for some therapeutic intervention,” she says.

President Joe Biden this week pushed for sufferers to get access to disability rights and resources due under US disability law. CNP

When asked, the Australian government said it was actively monitoring global research on the short and long-term health effects of COVID-19.

As long COVID can affect anyone, regardless of whether they had mild or severe disease and can involve multiple organs and bodily systems, the health economics are significant.

“A tsunami of long COVID cases” could be one of the costliest threats to a nation, says Richard Meade, research fellow in Economics, Social Sciences & Public Policy at Auckland University of Technology.

Writing in The Conversation, he says the social cost can’t be underestimated either. For youger people, it will likely outstrip the cost of dying, as they will carry a disproportionate burden of the pandemic’s long-term costs.

The potential impact for low- and middle-income countries is very concerning. And rich countries are worried too. This week, President Joe Biden pushed for sufferers to get access to disability rights and resources due under US disability law.

In the UK, a series of long COVID clinics have been established to help with the rehabilitation of those who’d had aggressive, initial infections and were dealing with issues like clots, heart attacks, strokes and kidney problems.

People with other issues have been encouraged to go too and the UK also allocated £20m to investigate all symptoms, from brain fog to hidden lung damage.

Many complaints have been attributed to long COVID, including extreme tiredness, shortness of breath, heart palpitations, chest pain, loss of memory, smell and taste, gastro-intestinal and bladder problems and joint pain.

Hallucinations, insomnia, vision disturbance and language difficulties were among the 200 symptoms listed in a University College London study.

“This is fascinating, although definitive conclusions cannot be made on the basis of this small study,” says Sydney’s University’s Professor Henry Woo. 

While the complaints may be real, it’s hard to know which symptoms are genuinely linked to COVID-19. Some are backed by solid science, some have no backing and some, have a little. Take the issue of erectile dysfunction.

A recent study in the World Journal of Men’s Health described how, following bouts of COVID-19, two men still had particles of the virus in their penile tissue six to to eight months later.

Apparently functioning well before the infection, both developed ED and underwent penile implant surgery, during which tissue samples were taken.

For comparison, the team from the University of Miami, Florida, looked at tissue from two men who having the same surgery who hadn’t had COVID-19.

The team reported this as the first time the presence of the COVID-19 virus had been found in the penis long after the initial infection in humans.

“This is fascinating, although definitive conclusions cannot be made on the basis of this small study,” says Sydney’s University’s Professor Henry Woo, a urologist and a member of the journal’s editorial board.

“I think this is going to be one of many chronic effects of COVID that will be uncovered over time,” he says.

Then, from an online survey of 100 sexually active men, a team from the University of Rome found those who had ED were five time more likely to have had COVID-19.

Again, this evidence published in the journal Andrology, was too light to be be meaningful.

As the world grapples to manage long COVID, there have been flashes of potentially dark and bright sides of it.

On the dark side, long COVID could become a wastepaper or trash can diagnosis used as a last resort for unidentifiable medical problems.

The research community is hoping this effort will eventually provide key insights into other post-viral syndromes too.

As there are no firm diagnostic criteria, anyone who has symptoms that continue or develop after the original infection, which cannot be explained by an alternative diagnosis, could have it.

This could apply in several situations: an anxious patient might pressure a doctor to label a condition or a doctor may need bureaucratic approval for a treatment.

Currently, as there is no test for long COVID, it remains a “diagnosis of exclusion” requiring other possible causes to be ruled out. .

On the bright side, it presents medical researchers with an opportunity they’ve not had before. To date, post viral syndromes have been notoriously diffuse and difficult to define.

At the time of infection, the virus was rarely pinned down which meant researchers were working backwards. Often, it seemed like an otherwise healthy person had subsided into an extended period of fatigue, with the trigger never identified.

A person might be overcome by glandular fever and only in retrospect might it emerge that, sometime in the past, the person had contracted the Epstein-Barr virus.

With long COVID, researchers are working in real time. Their unprecedented focus, the scale of COVID-19 and the global collaboration are likely to produce a greater understanding of the syndrome.

The research community is hoping this effort will eventually provide key insights into understanding and managing other post-viral syndromes too.

Meantime, Matthew’s team is recruiting patients with the delta variant to see if it has a different impact on long COVID.



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