Why Long Covid rehab must be very, very slow

When Judith first came down with Long Covid, in March 2021, she couldn’t imagine being able to return to her job: a demanding role in business development for a global engineering company. She suffered from fatigue, brain fog and breathlessness so debilitating that she had to ask her parents to care for her and her two children.

She counts herself lucky that, about six months later, she was able to resume full-time hours. It was the culmination of a careful increase in activity guided by an occupational health specialist experienced in chronic fatigue, provided by her employer.

“The support kept me restrained from increasing my hours too fast,” says Judith, 43, who did not want her full name published. “I had no experience of this condition — or any idea of what I needed to support me.”

She is one of 2mn people in the UK — about 3 per cent of the population — that the Office for National Statistics estimates is suffering from Long Covid. It defines Long Covid as a strain of the disease in which symptoms persist for more than four weeks, although most sufferers were first infected more than a year ago. For about three quarters of these people, Long Covid symptoms affect their day-to-day activities and, for one-fifth, those abilities are limited significantly.

Judith has also had relapses, brought on by Covid-19 reinfections, which have required her to temporarily reduce her hours. And her recovery is not yet complete, despite the progress she has made. But she has learned how to ration her energy, to keep her symptoms at bay.

It is all a stark contrast to her life pre-Covid, when she regularly worked through lunchtime and into the evening. Now, she has taken up a new job closer to home that allows her to set limits on the work she can realistically do. It has left her confident that she will recover further — although she concedes that she does not yet know what “well” looks like.

Judith’s experience underscores how, for some with Long Covid, specialist help and a supportive approach by an employer can enable a return to work. However, it is far from universal. The Institute for Fiscal Studies estimates that about one person in ten with Long Covid stops working, and a majority goes on sick leave.

“What is different about Long Covid is that there is still relatively little known about it,” says Lauren Walker, professional adviser at the Royal College of Occupational Therapists. “That’s probably why a lot of employers are still struggling. They have got these one-size-fits-all processes, like phased hours, in terms of returning to work.” 

So-called phased returns to work typically last four to six weeks and involve an employee gradually increasing their hours back to normal scheduled levels. With a condition like Long Covid, though, experts say the timeframe may need to be significantly longer — as well as non-linear, adjusting hours down as well as up.

Fiona McKechnie, a senior occupational therapist at North Bristol NHS Trust, says it is common for people with Long Covid to come to her clinic because their symptoms have flared up after returning to work too quickly. A new part of her role is to offer advice to employers on adjustments that may be needed for a sustainable return to the workplace. “Sometimes, there need to be tricky conversations on both sides . . . maybe full-time isn’t achievable for a year or so,” she says.

Sometimes, there need to be tricky conversations on both sides . . . maybe full-time isn’t achievable for a year or so

Judith was instructed by her occupational health specialist to resume work only after she could read a page from a book, or do a jigsaw puzzle, without becoming exhausted. To begin with, she worked one hour a day, every other day.

Research on Long Covid remains in its infancy, but experts are building a picture of how best to support people afflicted by it. Last year, the Society of Occupational Medicine published guidelines for supporting people with Long Covid to return to work.

“The key enablers are working from home, real flexibility and sustained flexibility,” says Jenny Ceolta-Smith, a researcher and occupational therapist who has Long Covid herself. Increases in hours and duties need to be slow and reviewed regularly, to avoid exacerbating symptoms, she stresses. Ceolta-Smith is one of the co-founders of Long Covid Work, an advocacy organisation that produces resources to guide employers in this area.

Practices adopted for other long-term conditions with overlapping symptoms, such as chronic fatigue syndrome, have proven effective for many Long Covid sufferers, occupational health experts say. A central concept in managing CFS is ‘pacing’, which warns sufferers against pushing themselves to the limit to avoid so-called boom-and-bust cycles. In CFS, as well as many Long Covid cases, overexertion is counterproductive. Experts say it is important to take an individualised approach because symptoms vary and, in some cases, returning to work may not be possible.

Educating people with Long Covid about their condition is key to helping them manage their symptoms, according to Bilal Baig, Long Covid lead at occupational health provider Bespoke Wellbeing. The company provides a six-session program for people with Long Covid, covering topics such as managing breathlessness and fatigue, setting sustainable goals, and improving sleep quality. His clients include employers across the private and public sectors, as well income-protection insurance providers.

Josie Tuff, rehabilitation team leader at Maximus UK, which provides employment, health and disability support programs to employers, says taking it slow is essential. “Often, I find that people are trying to return to work too quickly — or they’ve got a phased return plan but it’s not reviewed,” she says. The Maximus UK Long Covid program involves an initial assessment followed by several follow-up consultations to review and adjust the return-to-work plan if necessary. Tuff says the program typically lasts six to eight weeks and that 60 per cent of participants return to work full-time by the end.

Specialist technologies can also help people with Long Covid to do their jobs. Richard Southorn, Maximus UK’s head of workplace adjustment programmes, says mind-mapping software can help people with cognitive problems organise their thoughts. He adds that screen reading and dictation software can reduce the fatigue that comes with reading documents, or typing.

Lesley Macniven, a human resources consultant and co-founder of Long Covid Work, who is facing early retirement due to the condition, notes that “there isn’t an endless supply of endlessly committed, healthy talent.” As she puts it: “The community of Long Covid is the newest marginalised community that is asking us to adjust, to think about how we work, and live.”