The story of long Covid is just beginning, and no one – not even the experts – knows how it will play out.

The “known knowns” are that few, if any, health systems around the world are equipped to cope with the parallel pandemic of long Covid. It will have profound social and economic impacts above and beyond the already devastating effects of acute Sars-CoV-2 infection.

The “known unknowns” are the major gaps in our understanding of long Covid’s physiology – who it affects, why and how – and how these gaps are hampering attempts to treat those with the syndrome.

Experts say some solutions are obvious: better diagnostic criteria, better testing, better clinical trials and individualised treatments, alongside support systems for those affected. And most important of all, not getting sick in the first place. But will those solutions be deployed in time to mitigate the effects of the “mass disabling event” that has already begun?

Eight experts from around the world share their insights, questions and fears about the future of – and with – long Covid.

Professor Ziyad Al-Aly, clinical epidemiologist, St Louis, US: ‘My worry is that we’re going to be left with waves of people with chronic disease’

Long Covid is not a simple thing. The cardinal manifestations are brain fog and fatigue, but there are clearly symptoms of long Covid that are also manifestations of chronic disease, like an increased risk of diabetes, heart disease, kidney problems and neurological disorders.

Fatigue is potentially reversible but there are a lot of conditions that are potentially non-reversible, or chronic conditions that literally will scar people for a lifetime. I know in the public consciousness, people want to talk about fatigue and malaise all the time. A lot of times it’s the stuff that is most visible to patients, which is why they talk about it so much. Diabetes is a little more silent. Kidney disease is silent.

My worry is that we’re going to be left with waves and waves of people with chronic disease and that’s not only going to affect the lives and livelihood of these people, but it’s going to affect the economy, it’s going to affect education attainment, it’s going to affect their ability to maintain economic productivity and maintain a job and continue to be productive members of society.

Dr Shamil Haroon, public health researcher, University of Birmingham, UK: ‘We need good evidence on what works’

This is going to be one of the grand challenges of our time. The Office for National Statistics from the UK estimate that there’s around 2 million people in the UK with long Covid, which is just a staggering number.

We can’t send everyone to a specialist long Covid clinic because there simply aren’t the resources to do that. We need to think about scalable approaches, and we need good evidence on what works.

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We can’t send everyone to a specialist long Covid clinic because there simply aren’t the resources to do that
Dr Shamil Haroon

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If you were to just lump everyone together, and put them into a clinical trial, you would probably find that none of the treatments work. It’s got to be more targeted. We need pragmatic but targeted trials, where we can look at multiple treatments but at the same time tease out these different groups.

It’s a huge piece of work and getting it off the ground quickly is going to be difficult, because there just isn’t the same political impetus. We’re back to the same governance structure we had before, which is very slow. That’s going to be a challenge, delivering those trials at the speed that people want and deserve.

Dr Waasila Jassat, public health specialist, Johannesburg, South Africa: ‘There are devastating stories of going from pillar to post’

In South Africa, like in other lower-middle-income countries, we struggle with health services. Even pre-pandemic, we had so many inequities in terms of health access and service delivery which have only widened and worsened.

There are very few health services that have been developed for long Covid. For some people, it’s just going to be reassurance, it’s just going to be over-the-counter medicine or GP management for the symptoms. But some people need specialist referral and they need medical specialists, rehabilitation specialists, mental health providers, sometimes oxygen. We don’t have any kind of planning for those multidisciplinary services. There are devastating stories of going from pillar to post, going to doctors, not being taken seriously, not finding any help. So where we can, we try and refer them to sympathetic clinicians in the areas, but there’s a huge gap.

There is also the problem of the public health sector that just doesn’t have the capacity. We’ve been overwhelmed with huge waves and it’s impacted our routine health services; immunisation is down, HIV testing and treatment is down, TB testing is down. We haven’t been able to deliver routine health services, and now a patient comes in, they need to have all these extensive investigations for very vague symptoms. I just don’t see how our public health system would cope with it.

Professor Laura Mauldin, sociologist specialising in health, illness and disability studies, Connecticut, US: ‘We have to really value disability knowledge’

I think in a holistic way about disability as a social category, meaning it doesn’t matter to me what the impairment is – whether it’s heart failure, diabetes, a physical impairment – it’s all this larger social category. So I saw potentially millions of new people joining this already growing category of people.

In the US, the latest estimates are that about a quarter of the adult population is disabled. We already have systems that are inadequate and underfunded, people are already struggling – and we’re just going to add to it.

I know there are many people who have long Covid and may not identify as disabled, they may not take that on. But from the disability community, those kinds of issues that folks with long Covid are now facing resonate with their experience.

Part of what we have to do is really value disability knowledge and disability expertise on what it is to live with a chronic illness, on how to navigate these systems, how to advocate within them. There’s so much activism and expertise within these communities, and that is a powerful thing, even in the face of these enormous structural barriers and cultural barriers.

Dr Barnaby Young, infectious diseases specialist, Singapore: ‘It is a struggle. I am lost, to be honest’

What we’re seeing is, in some ways, reassuring. Vaccination uptake has been very good in Singapore – I think it’s about 97% of the eligible population is vaccinated. What that means is that most infections have occurred in vaccinated people rather than unvaccinated. The most puzzling, and the most complex cases of long Covid I’ve seen have been in people who were unvaccinated when they had Covid. And those are certainly very concerning, because I really don’t know what’s going on. I don’t have any treatment, I don’t have a diagnostic test which can really say what’s going on.

I don’t have any treatment, I don’t have a diagnostic test which can really say what’s going on
So it is a struggle. I am lost, to be honest. A lot of people who have been living with these symptoms for a long time have often been looking on the internet, talking with various people, and they come with ideas of what might work. What I’ve often been doing is actually talking through those ideas and seeing which ones might make sense to explore.

In some ways, I think this will be good for chronic fatigue syndrome [patients] –there’s much more attention and much more research being put into this. There are very close similarities with long Covid and there is certainly very interesting data coming out. Something will come out of that – whether it’ll be simple or straightforward, and how many people it will help, I don’t know.

Professor Fernando Bellissimo-Rodrigues, infectious disease specialist, São Paulo, Brazil: ‘It’s absolutely unpredictable’

We didn’t have any idea that this would take so long for people to recover. When we started to see people still complaining after three, four, six months, we realised that the acute phase of the disease was not the end of the disease.

We started this ambulatory care for post-Covid patients. We don’t expect any of this to be over or to be eradicated in the near future. We do expect that, with vaccination, the severity of the disease in the acute phase is going milder. But we’re still seeing patients with post-Omicron brain fog, even for the mild cases, so it’s expected that this will probably continue to occur. It’s absolutely unpredictable.

The pandemic itself has already compromised the care for chronic conditions like cancer and heart failure and diabetes. There was a time when we had to double our bookings because we were so overwhelmed by the many patients complaining of long Covid or post-Covid symptoms. Long Covid is a huge burden not only for the healthcare system, but for society itself.

But what I would say to patients is, if you are experiencing some of these most common symptoms, you should seek care. Don’t suffer alone.

Professor David Putrino, rehabilitation medicine specialist, New York, US: ‘We need to look outside the box’

We need to understand that long Covid is not all one thing. Looking for a cure for long Covid is the same as looking for a cure for cancer. We don’t have a singular cure for cancer, we have many targeted treatments, and they have been intelligently derived from physiological sequelae.

That is the approach we need right now: to understand each different endotype of long Covid, and provide a targeted intervention. We’re only going to get there with more detailed physiological testing, which is non-standard in the current health system. We’re seeing very clear physiological differences in our patient populations, but none of the testing we’re doing is standard. So we need to look outside the box.

We have different people who are getting a similar constellation of symptoms due to different underlying causes. I firmly believe that not everybody has an autoimmune condition with long Covid, and not everybody has viral persistence, and not everybody has dysautonomia. Our next step is to, in a very systematic way, understand who belongs in which bucket so that we can perform precision medicine treatments.

Professor Gail Matthews, infectious diseases physician, Sydney, Australia

There’s a huge amount of effort going on to help patients with long Covid at the moment. It’s not been as quick as it should be, but now there is a lot of attention and a multidisciplinary response.

I would really like to have a better understanding of what is triggering the symptoms of fit healthy people who have had a relatively mild disease, and who are still unwell now. I absolutely believe them, and until we understand what’s triggering that – and it may be complex – we don’t know how to treat it. It comes back to understanding the different types of patients, because what might work for somebody is not going to work for somebody else.

The most important thing is that we collect good, robust data on what long Covid is, how it’s affecting people, and its trajectory over time. Without a robust understanding of what we’re dealing with, it’s very difficult to plan – whether it’d be health services, therapeutic interventions, or other supports that people might need.

Bianca Nogrady
@biancanogrady

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