It's time to confront Long Covid: An interview with Clare Rayner on why we must keep pushing for research, treatment and prevention

Summary

The theme of this year’s International Long Covid Awareness Day is ‘Confront Long Covid: Recognise, prevent, act’.

In this interview, we speak to retired occupational physician Dr Clare Rayner about her work in understanding Long Covid and its impact on individuals, the health service and the wider economy. She talks about recent guidance she has developed on people with Long Covid returning to work and outlines the impact Long Covid has on the workforce. She calls on healthcare leaders and the Government to invest in treatment-related research as well as highlighting the significant health risks associated with Covid reinfection.

About the Author

Dr Clare Rayner is a retired occupational physician and since 2020 has led on the Society of Occupational Medicine's multidisciplinary guidance on Long Covid for workers and managers. She has advised on Covid internationally, most recently in Malaysia, Australia and Ireland, and was an author on the World Health Organization's living guideline rehabilitation guidelines on Long Covid. Clare was cofounder and a member of the Post Acute Covid Syndrome International Working Group (2020-21) alongside Dr David Putrino of Mount Sinai Hospital in New York. She is an adviser to the Long Covid Support charity and a Long Covid Kids champion.

Questions & Answers

Hi Clare, what's your background and why did you become interested in Long Covid?

I am an occupational physician by background and my training had quite a lot of crossover with public health. In occupational health we look at populations, albeit small ones! In a workplace, the population is whoever works there, or whoever is exposed to a particular hazard. It’s an innate part of our training to look out for new patterns of illness or novel conditions. 

In March 2020, along with many others, I got Covid myself. At that time, I linked up with some medical friends and we were sharing with each other what each of us was experiencing and seeing. Because of my training in pattern recognition, I started to notice the exact same things were happening in a lot of people. We were a few weeks into the pandemic and people were displaying some quite strange patterns of illness. 

We pulled together a group of doctors who had had Covid or were interested in exploring these patterns. Some of them started to run into issues themselves with long-term sickness absence. As I was the only occupational physician in the group, I started offering informal advice about what to do if you are off sick for a long time, in terms of talking to your employer. 

A medical friend and I started to write about the issues and from April 2020 we published a series of short pieces in the BMJ about the patterns we were seeing in people’s symptoms. We were highlighting very early on that Covid isn’t just a respiratory problem. We wanted to draw attention to the fact that there were many people who weren’t admitted to hospital who were very ill. We realised that both medics and employers needed to start recognising that we had a problem because all of these people were off sick at once.

At that time, we hadn’t yet defined these symptom patterns as Long Covid. Now it is well documented and affects millions of people globally. I find the World Health Organization’s (WHO’s) definition of Long Covid the most helpful: “the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation.” 

Why do you think 'Confront Long Covid' has been chosen as this year's awareness day theme?

There’s a sense of frustration in the community. We’re four years in now and have been talking about Long Covid for a long time.

The idea of confronting Long Covid is about saying to politicians and the heads of the health service: Look, we have a lot of people who are ill and damaged by this virus. They have been asking for appropriate healthcare for four years and many haven’t had any treatment or even assessment in that time.

We need the Government to listen to the call to treat people, and that means doing something rapidly to actually find treatments. I don’t think people are asking for anything radically new—there are simple treatments that could be researched and used. Policymakers need to recognise the problems people have and take them seriously. We also need to remain on the lookout for new problems that people who have been living with Long Covid for years might be developing.

What still needs to happen to improve diagnosis, treatment and support for people with Long Covid?

One of the biggest issues that we’re facing is reinfections. There is really good evidence now from huge studies about the dangers of reinfection with Covid-19. After three infections, the risks for death, hospitalisation, cardiac events and blood clots escalate. The data is there and it’s frightening.[1][2] Reinfection also seems to be pretty bad news for people with Long Covid—they often end up with their symptoms worsening. So we need to look at how to prevent reinfections across society.

One key area of this is preventing Covid infections in workplaces. That means cleaning the air and it means investing in engineering. It is particularly important in hospitals and these solutions don’t have to be expensive to be effective; some studies have shown that HEPA filters greatly reduce the rate of infections in healthcare staff and that FFP3 respirators can cut infection rate by up to 100%.[3][4]

In the absence of these solutions, I believe healthcare staff should be taking precautions to protect their patients, under health and safety legislation. Where patients are likely to catch Covid or where you have particularly vulnerable patients, staff should be using respiratory PPE. If there were appropriate ventilation methods in place, they wouldn’t need to, but as a temporary measure, we need to be protecting vulnerable people.

What work have you been doing recently in terms of research and guidance?

Over the past two years, I have led on two key documents. The first is a position paper published by the Society of Occupational Medicine (SOM), Long Covid and Return to Work: What works? SOM has been very proactive since late 2020 in picking up on some of the issues relating to Covid and employment, and the paper is based on a SOM multidisciplinary webinar that focused on this. It covers what Long Covid is, who might be affected, what assessments people need and how to get people back into work. It also looks at safety issues associated with Long Covid—as occupational physicians, part of our role is to ensure people are safe at work.

The second publication is an updated guide for managers published by the SOM Long Covid Taskforce in February 2024 entitled Support for people with Long Covid to return and stay at work. It contains quite detailed guidance and is very much a ‘how-to’ for managers and people with Long Covid. What we’ve seen is that when people have been sick and absent for very long periods—months and even years—it can be very difficult for everyone to navigate. Long Covid is also quite a complex condition as it can affect many different areas of the body and symptoms can go up and down. So we looked at what has worked for people in getting back to work—it needs a slow, very tailored response from the workplace. The guide outlines what managers should cover in meetings as well as the safety aspects relating to cognitive issues associated with Long Covid. We also want workers themselves to have the confidence to sit down and start having these conversations with their managers.

What we’ve put in the guide isn’t rocket science; it’s what should be done when you’re managing anyone with a long-term health condition. What we’re really emphasising is the need to give people an ‘individualised return to work plan’, a phrase we also used in the WHO guidance, which I contributed to.[5] I’ve noticed that this phrase is now in common use, which is great as we wanted the concept of individualised plans to seep through. It’s very early days, but the feedback we have had so far has been positive; I think employers are grateful for some guidance. Living with illness for a long time is really difficult in itself and managers make all the difference to a successful return to work. 

One of the difficulties is that the number of people affected by Long Covid illness is huge, and the people most commonly affected are working-age people. There’s a lot of talk in the news about economic inactivity, but the impact of Covid on sickness absence and restrictions on people’s abilities directly feeds into these numbers. We can’t unlink what’s happened with Covid from the economy. I would like politicians to realise that; it’s no big mystery.

Related reading

• Top picks: 12 Research papers on Long Covid
• Collaborative learning during a pandemic: The PACS (Post-Acute Covid Syndrome) International Working Group

References

1 Bowe B, Xie Y & Al-Aly Z. Postacute sequelae of COVID-19 at 2 years. Nature Medicine, 21 August 2023
2 Kuang S, Earl S, Clarke J et al. Experiences of Canadians with long-term symptoms following COVID-19. Statistics Canada, 8 December 2023
3 Wise J. Covid-19: Upgrading to FFP3 respirators cuts infection risk, research finds. BMJ, 29 June 2021
4 Morris A, Sharrocks K, Bousfield R et al. The Removal of Airborne Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) and Other Microbial Bioaerosols by Air Filtration on Coronavirus Disease 2019 (COVID-19) Surge Units. Clinical Infectious Diseases, 30 October 2021
5 Clinical management of Covid-19 patients: Living guideline. World Health Organization, 18 August 2023