Researchers lead the way in project that offers hope to people with long Covid

A research team led by scientists at the University of Derby has begun a study that could offer hope to thousands of people with long Covid.

The team is exploring the causes of Post Exertional Malaise (PEM) or Post Exertional Symptom Exacerbation (PESE) in people living with long Covid – these are terms used to describe the worsening of symptoms after physical or mental exertion, even at minor levels.

They are looking to recruit long Covid patients to take part in the study, which they hope will lead to a better understanding of PEM and PESE and enable them to develop support strategies to improve the quality of life for long Covid patients.

Mark Faghy, Associate Professor in Respiratory Physiology at the University of Derby, is leading the study, which involves medical and research partners in the UK and overseas, and is funded by Gilead Sciences.

He explained:

“We know that PEM and PESE can be brought on by both physical and mental exertion. At this early stage in our study we are focusing on physical exertion so that we can really understand how this works on the body’s physiology. Later on we will also look at the impacts of mental and emotional exertion and how these different forms interact.”

The team, including partners from Sheffield Hallam University and Northumbria University, is looking for volunteers with long Covid from Derby and Derbyshire, Sheffield and Newcastle to take part in the study.

The first step is a telephone consultation to determine whether it is safe and appropriate for volunteers to take part. This is then followed by three face-to-face visits at the institutions’ specialist facilities where participants will take part in a 90-minute testing session which includes completing two ten-minute sub-maximal (below maximum intensity) exercise sessions.

Dr Faghy said:

“We know there is a risk associated with this research but we have worked closely with patients and world-leading experts over 18 months to develop a novel protocol that will increase our understanding. Participants will be closely monitored throughout the study and we will stop any activity or test if necessary.”

The research team - highly trained expert clinical scientists - will monitor the sessions, ensuring that they are run at a pace that is comfortable for each individual. Dr Faghy explained:

“We know that choosing to participate in this study will be a difficult decision for many people with long Covid-related PEM or PESE. But by taking part they will enable us as researchers to gain invaluable insight that will contribute significantly to our understanding of why some people living with long Covid and other chronic conditions develop PEM/PESE and some don’t.

“From this study, we are hoping to shed light on the issues that lead to a worsening of symptoms and this information will help us better understand how we can support patients who have been plagued by PESE/PEM for years.”

Among the organisations supporting the research is Long Covid SOS. Helen Lunt-Davies, a patient advocate with the charity, said:

“This research is vital, and it is encouraging to see patient voices and people with lived experience being included in pre-study messaging.”

Among the long Covid patients who have been involved in preparing the study is Sarah Barley McMullen, a volunteer with Long Covid SOS. She said:

“Patients often have unique insights into their conditions, symptoms and treatment experiences that may not be fully understood by researchers or healthcare professionals, leading to higher quality research outcomes. I hope Dr Faghy’s patient involvement will support the development of more effective treatments, interventions and healthcare policies, ultimately improving patient outcomes and quality of life.”

If you would like to find out more about the research project and how to participate, visit the webpage or contact Dr Mark Faghy at m.faghy@derby.ac.uk