Dossier: COVID-19

Long COVID: Feeling ill after the illness

Trouble breathing, fatigue and pain: – many people continue to suffer even after recovering from COVID-19. But what exactly do we know about the long-term effects of the coronavirus and what are the grey areas of research at the moment? Epidemiologist Milo Puhan on the current findings of long COVID research.

Text: Katharina Rilling; photos: Unsplash / Frank Brüderli

It’s all in your head: What would you say to sceptics who claim that long covid is a myth?

The facts speak for themselves. People who have caught other viruses have also been known to suffer from post-viral fatigue syndrome, this is nothing new. The sheer number of those affected may have something to do with why this form seems to be particularly severe and easier to recognise. We’re talking about more than two million people in Switzerland! The scale is unprecedented.

What do we know at present about long COVID and what are the symptoms?

We know that it is an extremely varied syndrome with different symptoms or combinations of symptoms. Some people who have had an acute COVID-19 infection simply continue to suffer from the same symptoms. Others, including those with mild symptoms or none at all, are suddenly bombarded with health issues such as persistent shortness of breath, chronic fatigue and joint and muscle pain.

What is long COVID?

We don’t yet have a uniform definition of long COVID. According to Milo Puhan, it only makes sense to refer to long COVID if the person affected still hasn’t recovered three months after the diagnosis. Some studies only start to investigate complaints after 6 months has elapsed. We still don’t know why and how it happens either. Long COVID is not currently classified as an identifiable disease, but rather a syndrome. This means a combination of different symptoms where it is not clear how these are connected and what the cause is. The syndrome is also known as post COVID syndrome, PASC (post-acute sequelae of COVID-19) or long-haul COVID.

The website altea-netzwerk.com provides information such as the addresses of experts and a handbook with tips and reports. And there’s also a forum where you can chat with other people who have been affected.

How many people are affected by long COVID?

We estimate that around 20 to 25% of those who have had COVID-19 will suffer from long COVID symptoms three months after the infection. After six months, roughly 15 to 20% still suffer from long COVID, across all those infected and the severity of the effects. In other words: some continue to suffer from mild symptoms for a long time and others are faced with severe health problems.

Do we know who is most affected?

Women are affected significantly more than men. There is no real explanation for this at the moment. Men, for example, tend to experience more severe COVID-19 symptoms, whereas women have less of a reaction to an acute COVID-19 infection, possibly because their immune system is better able to deal with it. However, they are more likely to suffer from autoimmune diseases that can sometimes be triggered by viruses. The strong immune response then suddenly turns on itself. However, perhaps women are better at noticing symptoms. It is likely to be a combination of both.

“We have observed that many people are reluctant to see a doctor. Why? Because they don’t think they will be taken seriously.”
Milo Puhan, epidemiologist

So the long-term effects of COVID-19 could be a form of autoimmune disease?

That is one theory, but so much is unclear. What symptoms are associated with an acute COVID-19 infection and which exist because of the immune response or due to a new autoimmune reaction? The answers to these questions would, of course, be important in terms of prevention and therapy. I’m confident that we will know a lot more in the coming months.

What should you do if you feel tired / fatigued?

Mental, physical and spiritual fatigue are some of the most common symptoms of long COVID. What should you do if you feel completely overwhelmed by everyday life? The four Ps can help you to adjust: Prioritise, Plan, Pause, stay Positive. These four steps are vital:

  1. Be aware of your own current limitations: physically, mentally, socially and emotionally.
  2. Set a warning signal in each of these areas.
  3. Accept your current limitations.
  4. Speak about your limitations and let others help.

Controversial topic: How often do children suffer from long COVID?

We don’t know a lot about the effects on children. Around 100 children in Switzerland have been reported to suffer from long-term symptoms. An Italian study claims that roughly 40% of children in Italy who experienced severe symptoms continued to do so afterwards. But this is all a bit doom and gloom as only very few children end up in hospital. The vast majority of children experience no symptoms at all or, at worst, mild ones. We have no hard evidence of the effects of long COVID on children. Nevertheless, in the fight against COVID-19, we mustn’t forget the children. As we know, children will be last to be vaccinated. It would be dreadful if our youngsters suddenly start suffering from long COVID.

Does the vaccination help protect against long COVID? Should those who have already had COVID-19 be prioritised?

It remains to be seen how beneficial the vaccination is in this instance, which makes it difficult to prioritise people with long COVID. I’m hoping that the vaccination campaign will step up a gear now and that everyone who wishes to have the vaccine will soon be able to.

You’ve seen the studies. Has anything come as a surprise to you?

The sheer scale of study results is so large that pretty much nothing surprises me. I will say this though: there is currently very little evidence to suggest that socio-economic factors play a role. There is virtually no evidence on this topic here in Switzerland, but a large proportion of the working population in England claim that they have experienced health problems after COVID-19, with some not even fully able to work. There is talk there of 50 to 70 percent! These numbers seem absurdly high. I am curious to see the results of the long COVID study in Switzerland and I hope the numbers here are significantly lower.

Prof. Dr. Milo Puhan

Milo Puhan is professor for epidemiology and public health at the University of Zurich and director of the Institute for Epidemiology, Biostatistics and Prevention. Milo Puhan is a co-founder of the Corona Immunitas Initiative, a research programme that investigates the spread and impact of COVID-19.

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