Patients in Sussex suffering from long covid are among the first in the world to take part in a study

Patients in Sussex suffering from long COVID are among the first in the world to take part in a pioneering study looking into the long term cognitive effects of the illness and how to treat it.

The CICERO (Cognitive Impairment in long COVID: PhEnotyping and RehabilitatiOn) study is one of 15 research studies across the UK, backed by nearly £20m of government funding through the National Institute for Health Research (NIHR), which will fund researchers to investigate different aspects of long COVID, ranging from new diagnostic tests through to improvement of clinical services. 

The latest research shows that a significant proportion of people continue to experience chronic symptoms many months after their initial infection.

Dr Dennis Chan is Principal Research Fellow at the Institute of Cognitive Neuroscience, University College London, and also a consultant neurologist at University Hospitals Sussex NHS Foundation Trust. He leads the £1.2m CICERO study which will study how long COVID affects the cognitive functions of the brain and whether personalised cognitive rehabilitation may help people return to normal function.

He and his team will work with patients with long Covid seen in his Cognitive Disorders Clinic which is based at the Princess Royal Hospital in Hayward’s Heath. Other long COVID sufferers will be recruited to take part in the trial.

Dr Chan said: “Nearly 90% of people who experience long COVID have problems with memory, attention or other cognitive functions – symptoms known colloquially as ‘brain fog’.

“We have to understand why people are affected in the ways they are, we need to identify better the nature of the cognitive problems then find therapies which will help people return to normal daily activities.

“People are familiar with the term “brain fog” when it comes to long COVID. But let’s be specific. Brain fog is referring to cognitive impairment and this is increasingly recognised as a major component of long COVID. Its occurrence impacts quality of life and has major consequences for affected people, their families and the wider economy given people’s difficulty in returning to work.”

The CICERO study will first determine which elements of brain function are most affected in people with long COVID. The relationship between brain function and other symptoms of long COVID, such as fatigue and anxiety, will be explored, and MRI scanning will be used to identify the affected underlying brain networks.

The researchers will then develop and test a new rehabilitation strategy to help people recover from the cognitive aspects of long COVID and return to normal life and working ability. At the end of the study a freely available COVID-19 Cognitive Recovery Guide will be produced which will help clinicians deliver a rehabilitation programme that is tailored to meet each individual’s specific needs. 

Jason Lim, is a cognitive COVID patient who is taking part in the study. He is also a co-investigator in the study, leading the patient-public component.

Jason said: “I got COVID back in March 2020 but I was never tested and it was hardly anything for the couple of weeks or so. But then I started going downhill fast.

“The fatigue was really bad. The post exertional malaise can be really bad. This is any activity, physical or mental, if you go above a certain level, and you don’t know what that level is going to be on any given day, it makes you feel really fatigued.

“And it manifests itself in all sorts of ways – nausea; fatigue; gastro-intestinal problems; a whole breakdown really. It could last for days.  I was struggling to get out of bed.”

Jason, 46, who lives in Brighton and is a University Lecturer, added: “I was a very active walker. I love to walk. I would walk to work every day – half an hour away. Now I can barely walk around the block. It’s hard to perform the simplest of tasks.

“Once I heard about this I said to Dr Chan that I wanted to be involved and wanted to take part. I want my old life back. To walk miles, watch a film and remember it, return to work properly. I’m only 46…I’ve got so much yet to do.”

There will be 200 people taking part in the study, which has already begun. The results should be known in two years.

Dr Chan said: “The aim of this study is twofold; first, to understand better the nature of this ‘cognitive COVID’ in terms of the cognitive functions affected and the associated brain imaging changes, and second, to test whether neuropsychological rehabilitation can improve people’s outcomes.

“If this study is successful we will not only understand much better the way in which COVID affects the brain but also provide NHS services with new tools to help people recover from their cognitive difficulties.

“I am hugely honoured to be part of this and so are all the people working on this. This is the health problem of our age and to be trying to find treatments and cures is an absolute privilege.”