Long COVID – we’ve been here before

by Jennifer Trueland

Long COVID is a new condition, but those who have endured years of ME/CFS can share their common experience – and a long history of being misunderstood

Location: UK
Published: Friday 12 February 2021
Nina Muirhead

When it was becoming clear that COVID-19 was a serious issue early last year, Nina Muirhead (pictured) had a strong suspicion about what would happen next.

As a doctor who had developed ME/CFS following an attack of glandular fever four years ago, and in common with others in the scientific and ME patient community, she predicted that there would be a sub-set of people who, like her, would still be suffering months or even years after contracting the virus.

‘I wrote to Professor Whitty [England’s chief medical officer] and Sir Patrick Vallance [chief scientific officer] back in March saying there’s going to be a long COVID, and maybe there should be a health warning put out about this – maybe people should be advised of the long-term consequences, maybe we could do a study.

‘But they were so overwhelmed with fighting the big fire [acute COVID], and because ME is so misunderstood by the medical profession, they didn’t have the same end of the binoculars as I do. They didn’t see it coming in the same way.’

Nearly a year on, it’s becoming accepted that long COVID is a serious problem. The Office for National Statistics said in December that an estimated one in five people testing positive for COVID-19 exhibit symptoms for five weeks or longer, with one in 10 exhibiting symptoms for 12 weeks or longer.

Back in October, the NIHR published a dynamic themed review of evidence, which concluded that ‘ongoing COVID’ may be up to four syndromes, and that it can affect everyone, not just those who are hospitalised with the virus.

36699 strain STRAIN: Research into CFS is now attracting more attention

This almost flurry of research into long COVID contrasts with the experience of many with ME/CFS, who often have felt ignored or misunderstood by the medical profession. But for some, the interest in long COVID is an opportunity to learn more about the longer-term consequences of viral infections – which could, in time, also benefit people with ME/CFS.

David Strain, who is playing a leading role in the BMA’s COVID response, and who is researching long COVID as part of his job as a senior clinical lecturer at the University of Exeter Medical School, has witnessed this at first hand.

‘Prior to COVID, I was already working on chronic fatigue syndrome, and pre-COVID it was very, very difficult to get anyone to take an interest in either research, or data evaluation or to do studies into chronic fatigue syndrome, in the UK at least. I put grant applications in to do work into the underlying causes of CFS, pre-COVID, and they were commonly side-lined as low priority; now exactly the same grant applications are being funded.

‘Most of the patients in our CFS network are looking at the research that’s going on in long COVID and asking if this is a hope for them, because of the amount of political drive that’s going into it. Because [long COVID] has become a mainstream disease, does it mean that there is hope for them, assuming that their CFS or ME are similar, post-viral, debilitating illnesses?’

Patients are looking at the research that’s going on in long COVID and asking if this is a hope for them
Dr Strain

Certainly, there are strong similarities between the experiences of people with CFS/ME and long COVID. This includes doctors who have developed the conditions following work-related exposure.

Charles Shepherd is a case in point. Now the medical adviser to the ME Association, he became ill while working as a junior doctor in Gloucestershire around five decades ago.

‘Like most people with ME or long COVID, I was a young adult in my early 30s never having had any medical problems at all. I got a very nasty dose of chickenpox from one of my patients who had shingles, and it had an encephalitic component to it.

‘Like many people with ME and long COVID, including health professionals, I went back to work far too early, didn’t have any convalescence or sensible recovery stage – I just kept going back to work, going off sick, going back to work and so on. It took me two years before I got any diagnosis or form of management.’

Physical v psychiatric

ME was renamed and redefined as chronic fatigue syndrome in the 1980s, says Dr Shepherd, and there was an ‘intense’ medical debate about whether it was physical or psychiatric.

‘I suppose in simple terms that psychiatry won the day at that point, and convinced an awful lot of people that CBT [cognitive behavioural therapy] and graded exercise was the answer, because all that was happening was that patients were getting a viral infection, they were getting abnormal beliefs and behaviours and becoming deconditioned and that was the solution.

‘But now I think the clock has turned completely the other way and we have now, I think, got general acceptance that we are dealing with a medical problem.’

The ME Association has developed guidance and information resources for people with long COVID, and has also been the port of call for people who simply don’t know where else to turn.

41789 shepherd SHEPHERD: ‘I went back to work far too early, didn’t have any convalescence’

Dr Shepherd believes that the ME/CFS community has a great deal to offer in terms of how to manage long COVID, partly because of its long history of battling and campaigning, which has had some success.

Graded exercise therapy is one example: the latest NICE guideline on ME/CFS has ‘finally got the message’ that this isn’t the answer, says Dr Shepherd.

‘People need a different approach to activity and energy management along the lines of what we’ve been promoting for years, which is basically pacing and just trying to live within your energy envelope.’

Amy Small, a GP in Lothian who has campaigned on long COVID after becoming ill herself, acknowledges that she has learned a lot about management of the condition from the experience of people with ME/CFS.

‘One of the first things I did when I realised that I wasn’t getting better was that I phoned a friend who has had severe ME for several years.

‘I asked her what would you want to know if you were me now, and you could see this coming – what would you do? She suggested pacing first and foremost – learn to pace properly. I had never really understood what pacing was – I thought it was to do what you’re doing, but do it more slowly.

‘But someone on Twitter recommended a book to me called Classic Pacing for a Better Life with ME and that was a real turning point for me.’

Brain fog

Keeping a symptom diary and consulting a nutritionist have also been helpful – although Dr Small admits that some of the advice would previously have been anathema to her as an evidence-focused medic.

‘I think a lot of people with long COVID had found giving up sugar very helpful, and she’s got me on a load of supplements. I said to my husband years ago that if he ever caught me taking turmeric for medicinal purposes, then shoot me,’ she laughs. ‘Boy did I live to regret that. I think my attitude has changed.’

Almost a year into the pandemic, Ms Muirhead, a specialty doctor in dermatology surgery in Buckinghamshire, sees many parallels between long COVID and her own experience with ME.

After contracting glandular fever, she kept going back to work despite remaining ill, while also caring for her two young children, now aged five and eight.

‘I just kept thinking I had another virus, a flu or infection. I was really quite ill – coughing up blood clots at one point for 10 days – but I carried on working for months and months while really being debilitated.’

1 in 10 people covid positive have symptoms for 12+ weeks

She first had glandular fever in September 2016, and by the following March, she was so weak that she could barely get to the car park after finishing an operating list.

Brain fog meant that the simplest admin tasks became an overwhelming challenge. Realising she was unsafe to practise, she took time off work, then tried to return – and ended up taking time off again.

Unable to work, and unable even to fold a pair of socks before becoming exhausted, she eventually went to her parents’ house for a few days to recuperate.

‘I ended up staying there for five months, pretty much bedbound, being helped in and out of the bath, being given tiny meals and being helped to eat; I could barely lift my fork at times. But I was really convalescing, sleeping 16 hours a day, so that turned things around for me in terms of starting to enable my body to start rebuilding itself.’


Helped in and out of the bath, being given tiny meals and being helped to eat
Nina Muirhead

Ms Muirhead’s symptoms included post-exertional malaise, extremely debilitating fatigue, total body pain, cognitive dysfunction, headaches, nerve pain and tingling, and generalised weakness.

She could barely walk and had to use a wheelchair. In other words, symptoms that are being reported by those who have what has come to be known as long COVID.

Her employers have been hugely supportive, she says, and have adapted her work schedule to accommodate her needs – she has now built up to doing two days’ work per week, although she actually does it over four days.

But although her condition has improved, she is still far from well, which only underlines calls for proper recognition and management of serious post-viral conditions.

‘So basically I’m long COVID four years on – this is what it looks like,’ she says. ‘I do feel for the people with long COVID.

‘It’s horrible, and there are no easy answers. But we need to take this seriously because we’re only seeing the tip of the iceberg at the moment, and it’s going to get worse.’ 

1 in 5 people covid positive have symptoms for 5+ weeks