Post-viral syndromes are difficult to diagnose and treat – a fact thrown into sharp relief over the past two years as Long COVID has emerged. In the UK alone, an estimated 1.3 million people in the UK reported experiencing long COVID in the four-week period up to 6 December 2021, official figures show. The threat of long COVID, which can cause significant staff absences, is posing a major long-term challenge for employers and employees alike.

A small number of people with post-viral fatigue go on to develop myalgic encephalomyelitis, more commonly known as ME. Living with the condition presents a whole range of challenges, as ICAEW member Juan Corlett knows only too well, when as a Director at Crowe Morgan chartered accountants in the Isle of Man, he developed chronic ME.

“Life was unimaginably difficult for two and a half years, but thankfully there have been material signs of improvement this year and I hope to return to work part time in 2022,” he says.

To be clear, ME isn’t just feeling tired. Those with the condition can present an array of symptoms ranging from an inability to regulate body temperature, headaches, insomnia and dizziness to brain fog, irregular heartbeats and a dysregulation of all core bodily systems.

Anyone can get ME, including children, but it’s more common in women, and tends to develop between the mid-20s and mid-40s. Although ME itself was not actually diagnosed until 2018, Corlett had suffered a bout of glandular fever in 2012 and then went on to have intermittent periods of extreme fatigue, which he now knows to have been symptoms of ME, between 2013 and 2018.

In Corlett’s case, he feels a hip operation in 2014 triggered chronic ME. “With hindsight, the physical trauma of the hip operation caused the ME symptoms to return,” he says.

Regaining his previous fitness levels became insurmountable. Despite seeing gradual improvements over a four-year period, the toll on his body was finally too much and by the summer of 2018, normal life evaporated as the ME symptoms swiftly became worse.

At its worst, Corlett says of his illness: “The day is all about endurance. It is absolutely awful. I was incapacitated, unable to talk for large periods, unable to talk with a friend for more than five minutes without getting tired. Work was a distant dream. I couldn’t cook for myself. I couldn’t feed myself at times; I couldn’t even shovel food with a fork into my mouth. It was just horrendous. Life was taken away from me completely.”

He eventually made a mental breakthrough with the illness some six months after the relapse. “I stopped fighting against it or trying to control things that you can’t control,” he explains. “I started learning just to make the most out of the situation and try and come to terms with what life would be like with this illness. I became more comfortable with it and that, I think, helps the recovery.

This was also around the time that he was first actually diagnosed with ME, having managed his symptoms through trial and error for seven years.

Even having mentally accepted the situation, there was an underlying anxiety over the future of his career and life in general, with very few signs of improvement for month after month. For much of 2018-20, he was housebound and barely able to care for himself, reliant entirely on his mother’s cooking – delivered to his flat where he lived a solitary existence, primarily because of his “unbearable sensitivity to almost any noise”. But through a friendship established with another person living with ME, he started helping local charity ME Support (IOM), whenever his energy levels allowed.

Activism

Corlett helped draft a two-page summary of what the charity wanted from the health service in the Isle of Man. By 2020, it had shared this document with local politicians and it began to gain some traction because the UK was in the midst of the global pandemic and signs of long COVID had begun to emerge.

Fortuitously, former accounting colleague Lawrie Hooper, a backbencher in the House of Keys, the Isle of Man’s lower house in its Parliament, asked Corlett to do a presentation to politicians about post-viral fatigue in May 2021. Hooper has since become Minister for Health and Social Care on the island.

“I was only strong enough to speak for 10 minutes, but persevered because we were so desperate to get the politicians on board. Thankfully they engaged with the topic and we established political traction for it to be discussed properly in a parliamentary debate the following week,” says Corlett.

The result has been an introduction to Manx Care – the equivalent of an NHS Trust – and Corlett and ME Support (IOM) have been actively communicating with its director of operations to create an improved and dedicated service for ME and long COVID.

Some of their requests include a dedicated service populated with expert medical practitioners in the field of post-viral fatigue. To accompany that, they ask for a robust referral system within GP practices, so GPs know how, when and where to make referrals, as well as how to liaise with staff in the dedicated unit.

“It’s quite easy to misdiagnose these conditions because diagnosis is by elimination,” says Corlett. “You can’t get a positive diagnosis. There is no blood test for it.”

There is now a business case in the pipeline that the health team has drafted, but it needs Treasury approval to give it the budget and extra resources required.

Beside his political campaigning, Corlett continues to build up his strength and hopes to return to work part time this year thanks to the support of his family and friends and, critically, his employer. Despite the fact that he last worked in 2018, he has maintained regular contact with his employer, who has always suggested they would welcome him back, either to his old job or an adjusted role and is now engaged in conversations about a measured, phased return to work. 

What employers should know

For employees returning to work after a bout of post-viral fatigue or ME, employers should understand the recovery trajectory. Experts suggest the following:

• employees work closely with their employers in increasing activity;
• set up a health assessment process and consider a range of support;
• draft a return-to-work pathway;
• avoid a blanket approach to those with post-viral fatigue – it is a spectrum and will differ from person to person;
• set out a phased return and temporary flexible working; and
• avoid disengagement with those on long-term sick leave – it could lead to an employment tribunal.