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A University of Oxford technician working on research into Covid vaccines, 2020.
A University of Oxford technician working on research into Covid vaccines, 2020. Photograph: John Cairns/University of Oxford/AFP/Getty Images
A University of Oxford technician working on research into Covid vaccines, 2020. Photograph: John Cairns/University of Oxford/AFP/Getty Images

I’m a Covid researcher – and I have long Covid. That’s why I have to be part of the fight against it

This article is more than 1 year old
Stephanie Longet

I am one of two million sufferers in the UK. When I read new studies, I am also trying to understand what’s going on in my legs

I first arrived in the UK from Switzerland in 2019 to work at the High Consequence Emerging Viruses Group at what is now the UK Health Security Agency. At the time, my project was focused on Ebola virus disease survivors. I was excited for a new chapter in the Ebola field. But Covid quickly changed our plans.

We applied our skills to develop Covid treatments and new antivirals. I was involved in early research to study the Sars-CoV-2 infection, and test vaccine candidates.The lab moved to the University of Oxford, where we joined a consortium of researchers who were studying how the immune system was responding after people had been vaccinated.

The whole time, it was like a race. For the first time – unlike Ebola – I had some friends and family members who were infected by the pathogen I was working on. Some of them developed severe disease and were hospitalised. One of them passed away. My mother developed long Covid. It was a nightmare, but at least I felt I was playing a role in this great battle.

Then, in June 2022, I woke up and had difficulty walking. I assumed I was tired. I had been vaccinated three times, and I had never tested positive before, even after exposure to Sars-CoV-2. But 36 hours later, the lateral flow test confirmed that this virus I had been working on for two years had finally caught up with me. I spent six awful days with terrible pain in my whole body, and I had difficulty walking from one room to the next.

Many of my symptoms dragged out for a long time. I lost taste for three weeks and smell for six. I was tired for many weeks afterward. But even now, more than seven months later, the pain in my legs has never gone away. It feels as if I have the legs of an elderly person. I can only exert a small amount of effort at a time while walking. I know there are people in worse condition than me. I am still able to work, for instance. But every moment, I still remember that I got Covid and I never fully recovered.

Currently, 2 million people experience self-reported long Covid symptoms in the UK. Because of the prominence of the condition, there is a huge scientific research interest. There are four main hypotheses about what could be causing the disease. Viral reservoirs, or areas in the body where Sars-CoV-2 is persisting even after the initial infection appears to have cleared. Autoimmunity, meaning the immune system could be dysregulated following Covid and could react against the body’s own components. Latent virus activation, meaning that viruses that lay dormant within the body, like Epstein-Barr, or herpes, may be triggered by Covid. And the possibility that long-term inflammation arising from Covid is causing tissue damage.

As a researcher myself, the hypothesis of viral reservoirs looks quite relevant to me. There may be places in the body where the virus itself, or its leftover genetic material or protein molecules, are leading to a persistent stimulation of the immune system and chronic inflammation. It was recently shown in a study that Sars-CoV-2 was able to infect and produce its genes and various structural components in a wide range of tissues in the body, including muscular tissue. Interestingly, a study also reported that circulating spike proteins were detected in 60% of patients with long Covid, up to 12 months after acute infection. However, an association does not necessarily mean it is the cause. Actually, when I read new studies about the topic, I am also trying simply to understand what’s going on in my legs.

About three months after my initial infection, I requested a blood test with my GP to exclude other muscle conditions. But everything looked normal. I also met a physiotherapist, but as I did not have any mobility issues, he was not able to help me. To get more insight into my condition, I signed up as a patient in the Wilco research study led by Prof Danny Altmann at Imperial College London, which attempts to understand the immune system issues underlying long Covid. I also joined a study led by a team in Luxembourg, developing a phone application to improve symptom tracking and follow-up. And I joined an association of patients, and am in touch with some long Covid communities on social media.

I’m starting a new position as an assistant professor in France very soon. My work topic will be mucosal vaccination – delivering vaccines to places, such as the inside of the nose and mouth, where pathogens actually enter the body – and one axis of my research will be focused on Covid-19. If we develop vaccine strategies to improve long-term respiratory immunity, it may help to reduce the infection rate, and, ultimately, the long Covid rate, too. Current vaccines are highly efficient at reducing disease severity, but less effective against simply getting infected.

My plan is also to develop a project about long Covid and to see if mucosal immunity is different between people who fully recovered following Covid, and people who did not fully recover. In every country we need long-term resources and funding to pursue this type of research.

I do not know if I will see any improvement in my condition. Or what will happen if I get another infection. I am still very cautious, and my N95 mask is still my best friend. I work in the field, and I suffer from long Covid, so I have to be involved in this battle. Although it is difficult, every day my long Covid symptoms give me strength to pursue research, to better understand and treat the condition.

  • Stephanie Longet is a postdoctoral researcher in immunology at the University of Oxford, and an expert in infectious diseases and vaccination

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