What can we learn from people who report recovery from Long COVID?

“We heard from people who said they had benefited greatly from a so-called mind-body approach to their symptoms,” says Professor of General Practice Hedwig Vos. “We found that interesting and decided to interview them. We wanted to better understand what people mean when they talk about a mind-body approach and what role they themselves believe this approach played in their recovery. We wrote this up, and it has now been published in a scientific journal.”

In this type of qualitative study, researchers do not focus on large numbers of people or measurable effects. Instead, they try to map the experiences and perspectives of a particular group. For this study, eighteen people were interviewed in depth about their illness history and their path to recovery. Despite their different backgrounds and symptoms, they described how they experienced a mind-body approach and how, in their view, it helped them resume their daily activities.

What did these people experience?

Although no two stories were the same, several recurring themes emerged. Participants described a change in how they viewed their symptoms: from “my body is seriously ill” to “my symptoms are the result of a dysregulated brain or nervous system.”

Participants drew inspiration from the recovery stories of others. For example, they read about the importance of accepting their current situation and stopping the struggle against their symptoms. Through these stories, they also became familiar with a different approach, namely the use of mind-body techniques.

As participants described it, the term “mind-body approach” does not refer to a single treatment or theory, but rather to a collection of ideas, techniques, and practices that they considered relevant to their recovery. “This approach is aimed at re-regulating a dysregulated brain and nervous system, which possibly fits with modern neuroscientific theories about how the brain works and how symptoms arise,” says physician-researcher Christine Deurman.

Understanding people with Long COVID

The researchers are aware of the sensitivities surrounding this topic. Many people with Long COVID have experienced for years that their symptoms were not taken seriously or were even dismissed as psychological. More research into the factors involved in Long COVID is therefore urgently needed.

Deurman explains: “Long COVID can completely disrupt people’s lives, and there is still little evidence for treatments that work well for everyone with Long COVID. At the same time, we know surprisingly little about recovery from Long COVID. I wanted to listen carefully to people who say they recovered with a mind-body approach and learn from their experiences.”

Limitations of the study

The researchers deliberately sought out people who said that a mind-body approach had played an important role in the improvement of their symptoms. These participants were recruited through social networks in which mind-body approaches to Long COVID are discussed. All participants were women, and almost three-quarters had a higher educational level.

“We do not know to what extent the mind-body approaches described by participants actually contributed to their recovery. A descriptive qualitative study involving a small group of people cannot answer that question,” says Deurman. To determine this, the researchers would need to conduct a different type of study that measures the effect of a mind-body approach on recovery. It is also important to investigate the experiences of people who did not experience improvement following a mind-body approach.

“What we have learned is that recovery is sometimes possible. Ultimately, we hope that the insights gained from these recovery stories can contribute to greater hope and perspective for people who are still struggling with Long COVID.”

This research was made possible by ZonMw/Health Holland.