Leveraging the experiences of people with Long Covid to generate better research

Nick Sculthorpe reflects on pacing, co-production, and Long Covid.

For many people, infection with COVID-19, while unpleasant, is thankfully relatively short-lived, but for others, symptoms persist for far longer. Cases of individuals experiencing symptoms, months after infection, are frequently reported. Initially referred to as “long haulers”, reflecting the duration over which the symptoms persisted, the name “Long Covid” was later coined by those with the condition. The fact that the name came from the Long Covid community and that they have largely resisted attempts to rename it (e.g. post-covid syndrome) speaks to their engagement with researchers and medics. I want to make the case that researchers should capitalise on this engagement using public patient involvement to improve the quality, relevance, and impact of their work.

Our work focuses on fatigue as the most common and debilitating symptom. In Long Covid, fatigue is better described as a cluster of symptoms, including complete mental and physical exhaustion, far out of proportion to any effort that preceded it. The phenomenon is commonly referred to as “Post Exertional Malaise”.[i] The only real help for PEM is extended rest, and the best approach is to try to avoid PEM in the first place using a technique called pacing. When pacing, individuals aim to manage their energy demands by matching what they do with their available energy. While pacing sounds simple, it can be extremely challenging and when we talked with people with Long Covid many reported finding it difficult. It requires keeping track of some poorly defined concepts, such as how much energy you feel you have, how much you think you have expended, and how much the tasks you want to do might take. PEM might also occur several days after an activity, meaning the individual must track all of this information over many days, and all while trying to simultaneously manage “brain fog”.

Our pacing study aims to use activity trackers to reduce the overhead required to pace well. Trackers themselves are of limited use in pacing (since they promote extra activity). However, by reprocessing the data, we can provide better information about activity levels throughout the day and send alerts messages when participants risk doing too much. Also, because the data is stored, we can review activity levels for several days before a bout of PEM to help identify a likely trigger. Of course, activity tracking is not the whole answer. Cognitively challenging activities such as focused reading and writing, or emotionally draining activities such as family visits (or emergencies), are likely to contribute to PEM while being broadly invisible to activity tracking. Nevertheless, by helping to manage the areas where activity tracking works, we hope to create a little more headroom so those other factors are perhaps less debilitating.

As we developed our study, we were exceptionally fortunate that people with lived experience of Long Covid were prepared to give their time and energy to help. Early in its development, we spoke with Long Covid Scotland to make sure our research addressed questions that are important to people with Long Covid, and they continue to help us have regular public patient involvement meetings. Their experience, advice, and suggestions have informed everything from the big themes such as initially identifying the difficulties with pacing, all the way through to of how our app displays activity information. As a result, we have a better study that addresses a question that matters to people with Long Covid and does so in a way that they are likely to find acceptable.

Similarly, our app sends alert messages when people are at risk of doing too much. Aside from the technicalities of ensuring these alerts are delivered at the correct time, equally important is the wording of the message itself. In our experience, messaging needs to be easy to understand but not condescending while also being aware of the experiences of the intended recipients. We also need a lot of different messages that meet these criteria, as participants tend to disengage when they repeatedly receive the same message. It turns out that this is not easy to do well, especially for a team of researchers who do not have Long Covid.

Again, we turned to people with lived experience for help. In this case, we asked the ME/CFS community, a group that have experience using pacing to manage their symptoms, to tell us what they wished they had known when they started pacing. The result was overwhelming, and we received hundreds of tips and hints to help with the realities of pacing day-to-day. These co-produced ideas now form the basis of our alert messages. They are more varied, more practical, and critically, far more authentic than our research team would have been able to produce. These characteristics mean they are more likely to be understood and acted upon by the recipients, which in turn increases the likelihood of the intervention being beneficial. It also means the research funding is more likely to return some benefit for the investment.

Both of these examples demonstrate why good public patient involvement benefits everyone. In our case, the support has improved our research by providing a context for the questions we should ask and ensuring that we focus on problems that are important to those living with the condition. In the case of our alerts, not only are the messages better, public patient involvement has made us aware of new approaches to working that will benefit future research.

Public patient involvement informed research is not new and has been increasing in importance for over a decade. Nevertheless, ensuring that those with the condition can contribute to the design and development of research remains critically important to address real-world problems with high quality, challenge-led research.

For more information on the pacing project, or to get involved, visit the project website (this link will take you away from our website).

[i] PEM is a contested term, and for a good reason. Researchers are slowly adopting better names such as post-exertional neuroimmune exhaustion (PENE). However, it remains the most commonly used term, so it is included here.

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