Leicester’s 53 years old patient, Travers David McCullough, shares his experience of long COVID and how he decided to take part in a Leicester research at Glenfield hospital.
The PHOSP-I study, led by the respiratory team at the NIHR Leicester Biomedical Research Centre (BRC), is exploring potential treatments for people living with long COVID and aims to improve understanding of how the condition affects patients over time. The study involved regular visits, assessments, and weekly or alternate weekly injections of Tocilizumab or placebo over a three-month period, with follow-up for observation a further three-months after end of medication.
After three years of living with long COVID, one participant on the study shared how taking part helped him better understand his condition and, for the first time, gave him hope that treatment is possible.
Before developing long COVID, he describes himself as fit, active, and medication-free.
“I was fine before COVID, I didn’t take any regular medication. I’d wake up in the morning, maybe take a multivitamin, and that was it.
“That changed after contracting COVID-19.”
“It never really cleared. I went through months of tests because long COVID is usually diagnosed by ruling everything else out first. That process took about nine months while I was experiencing persistent physical symptoms.”
“It’s like the burning you get after intense exercise, but I have that all the time. In my legs, arms, back… even my jaw. It’s constant. Even when I’m eating, sometimes I have to stop halfway through and just rest my jaw because it gets so tired. I also experience brain fog. I work in finance and I used to stand in front of hundreds of people and give presentations. Now I struggle to find the right word. I know what I want to say, but I can’t say it.”
“After being referred to a long COVID programme, I was offered the opportunity to take part in the PHOSP-I study. For me, it was a no-brainer. I had nothing to lose and everything to gain.”
“Taking part in the study was straightforward. One injection a week, a chat with the team, and then I’d head off again. Everything was clearly explained from the start.”
“After a few weeks in the trial, things started to improve. The burning sensation disappeared. Even other issues I have had started settling down. I’ve got like a creaky knee, that stopped creaking. I had a little bit of an upset tummy sometimes, that settled down as well.”
“Over the last few months without medication, everything’s gradually come back. But now I know there’s something out there that works for me. That’s given me hope. Before this, I felt stuck. Now, at least I know there’s a way forward.”
Reflecting on his experience, he also highlighted his relationship with the research team, “The staff have been amazing. You build relationships, you have a laugh, and you feel like people actually understand what you’re going through. That makes a huge difference.”
Anum Iqbal, Respiratory Research Nurse said, “In clinical care, you often have to move quickly from one patient to the next. In research, you get the time to really understand what patients are going through, how their symptoms evolve, and the impact it has on their lives. It’s been a really positive experience. You build connections with patients, and it’s bittersweet knowing those regular conversations are coming to an end.”
Mamoon Iqbal, Research Fellow on the study added, “We look at both objective measures and how patients feel. Some experience improvements, others less so, but every contribution helps us understand the condition better.”
“Even if a treatment doesn’t show a clear benefit, we still learn something valuable. It helps us refine future research and move closer to finding what works.”
While Travers shared positive experiences during the study, this reflects one participant’s individual journey while taking part in PHOSP-I. Further analysis of the study findings will help researchers better understand the effectiveness of the medication and its potential role in supporting people living with long COVID.
For the participant, taking part in research is something he would strongly encourage others to consider. As Travers said, “If you’re given the opportunity, why wouldn’t you? Even if it doesn’t help you directly, it helps build knowledge for others.”