‘Long covid turned my body into a prison’

The coronavirus pandemic may seem long behind us, but many people continue to experience the daily consequences of covid. Six hundred thousand individuals are living with long covid, of whom 90,000 are so severely affected that even the most routine daily activities are overwhelming. "Earlier this week I was in email contact with a woman in her early thirties who has been confined to bed for a very long time. It is almost unimaginable", said researcher Marieke Stammes to Omroep West.

The regional broadcaster visited as part of National Long covid Week. They produced both a television segment and an online article. On camera, Marieke Stammes explained how she and her colleagues are working to understand what happens in the body with long covid. 

"What we are seeing is that long covid manifests differently in each individual", the researcher says. "There are hundreds of symptoms and likely several underlying mechanisms. That is what makes it so complex". For BPRC colleague Francisca van Hassel, long covid began in 2022 following what initially appeared to be a mild infection. "At first it was mainly lying down and being able to do almost nothing. Completely exhausted, with my body in a constant state of alarm".

Difficult to understand

Walking became limited to short distances, and everyday tasks turned into a challenge. "Reading longer texts was nearly impossible. I simply could not concentrate". Her experience aligns with what researchers are observing in their work.

"For instance, patients describe symptoms that suggest a lack of energy in the body or issues within the brain", Marieke Stammes explains. "However, the underlying causes differ from person to person and are still far from fully understood". Francisca confirms this. "What Marieke mentions about oxygen deficiency, that is exactly what I felt. In my body as a kind of acid build-up, and in my mind as brain fog".

Searching for what goes wrong in the body

This variation makes long covid difficult to understand and even more challenging to treat. For that reason, Marieke and her colleagues are working to piece the puzzle together step by step. They monitor changes in the body before and after infection and compare these with findings from patient research. "We are able to conduct this research so effectively using monkeys because we can observe them both before and after infection and carry out measurements that are often not possible in patients".

They examine, among other things, the immune system, changes in the brain, and the functioning of mitochondria, the energy producers within our cells, for example whether they generate less energy than normal. "By combining different research methods, we hope to gain a clearer understanding of what is going wrong", the researcher says. "Only then can we begin to search more effectively for targeted treatments".

Francisca’s recovery was gradual and required considerable patience. "Long covid turned my body into a prison. After a year and a half I regained my daily life. Returning to sport took another year. I have now fully recovered". What helped her was finding a way to understand her symptoms. "For me it was the idea that my autonomic system had remained stuck in a kind of danger mode, as if my body was constantly on high alert".

She began to carefully rebuild her activities. "Always in small steps. A short walk, then slightly further. My body had to relearn that things were safe". Gradually something changed. "Once my system started to recognise things as safe again, the symptoms eased. Step by step I regained control of my body".

"What works for one person does not necessarily work for another"

At the same time, Marieke emphasises that recovery from long covid does not follow a fixed pattern. "What works for one person does not automatically work for another. That is why it is so important that we better understand the underlying mechanisms".

Despite growing attention for long covid, many questions remain unanswered. Why do some people develop long term symptoms while others do not? What causes the wide variation in symptoms? And how can targeted treatments be developed?

For the researcher, that is precisely what it is all about. "If we did not believe we would find answers, we would not be doing this work. With each step we move a little closer. For those who continue to live with the daily consequences of long covid, that sense of perspective can make all the difference".