It starts with Laura missing just a couple of lessons here and there. But slowly, the absences creep up until she is regularly off sick for whole days and is missing significant amounts of learning. Nobody can get to the bottom of what is wrong: medical diagnosis is slow and uncertain, support ideas are sporadic, the school is left to make do and try things out to see if they work.

The situation drifts, tensions rise, relationships between school and home become strained, and Laura’s education suffers.

Experienced leaders may be thinking Laura has ME. After all, this pattern of events will be familiar to those who have, in the past, had to support pupils with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), to give it its full name.

But Laura probably does not have ME. It’s more likely she has post-Covid-19 syndrome, better known as “long Covid”. And it seems that the journey for young people with long Covid may be at risk of mimicking the experiences of some of those living with ME: poor diagnosis, unclear treatment and huge challenges for schools and the young person involved.

So what, as a school leader or teacher, do you need to know to make sure that doesn’t happen? It’s useful, first, to look at the history of ME.

“It’s an illness that has divided the medical profession for many years,” says Charles Shepherd, an adviser to the ME Association. Thirty years ago, many in medicine were dismissive of it, he points out.

“When I was at medical school, I was told it was nonsense and to forget about it,” he says.

Such views meant families were often on a collision course with schools and social services, with parents unable to produce medical justification for their child’s prolonged absence from class.

“The tragedy is that the medical profession has not met the needs of children with ME over the past 30 years, often leaving them at the mercy of the education system juggernaut,” says Nigel Speight, a specialist in paediatric ME/CFS and also a consultant paediatric adviser to the ME Association.

Things do seem to be slowly improving: new guidance from the National Institute for Health and Care Excellence (Nice), issued in November 2020, recognised that it is a “complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms”.

The situation facing those with ME/CFS is still tough, though. The crux of the issue with the condition is that doctors cannot find a medical reason for a patient’s symptoms so this leads some to suggest those symptoms are the result of psychological challenges.

As Gerald Coakley, a consultant rheumatologist and specialist in post-viral and chronic fatigue, told Tes last year: “At the least sympathetic end of the spectrum, there are doctors who cannot see a logical explanation for those symptoms and decide that these are people who are neurotic hypochondriacs. I think this is profoundly wrong, unscientific and unfair.

“There is clearly some kind of biomedical problem that means that some people have this bad reaction to a virus that we don’t really understand, but that does not make it any less real.”

In the same article, David Vickers, medical director at Cambridge Community Services NHS Trust and a specialist in paediatric ME/CFS, put it more bluntly: “Frankly, anyone saying this is a psychiatric diagnosis is being very, very simplistic.”

It’s easy to see how this debate and misunderstanding among medical professionals spills over into the view of ME for patients, families, the wider community and schools, creating huge problems in diagnosis and support, and a lack of guidance for teachers and other school staff to ensure a young person can still access education.

The long and the short of it

Unfortunately, it seems history may be repeating itself with long Covid.

Not that you’d think that from a cursory glance at the situation: on the face of things, acknowledgement about long Covid’s existence and potential seriousness seems to have come quicker than it did for ME.

It is defined by Nice as a Covid infection that lasts beyond four weeks: “[Long Covid] includes both ongoing symptomatic Covid-19 (from 4 to 12 weeks) and post-Covid-19 syndrome (12 weeks or more).”

And it’s clear that children are being affected, with data from the Office for National Statistics, published in February, suggesting that around 12 per cent of two- to 11-year-olds and 15 per cent of 12- to 16-year-olds had at least one Covid symptom more than five weeks after contracting the disease.

Meanwhile, a review of long Covid by the National Institute of Health Reviews (NIHR), published in March, said it saw evidence of children being affected by long Covid “more frequently than expected”.

This research cited a study in Italy that looked at evidence from 129 children who appeared to have long Covid, with 42 per cent experiencing issues 120 days after infection.

These Italian researchers also worked with the UK parent group Long Covid Kids, to find out more about the symptoms being experienced, for a paper, published in March - with tiredness, fatigue, headaches, joint pains and post-exertional malaise among the most common issues reported.

And perhaps most notably - given how long it took for ME/CFS to receive clear Nice guidelines - Nice issued “rapid guidelines” on long Covid for medical practitioners in December, which defined it as a “new and emerging condition, which has been described using a variety of terms, including ‘long Covid’, [and] can have a significant effect on people’s quality of life”. Nice also noted that it affects adults, children and young people alike.

The guidance also lists 28 different symptoms experienced by those affected by long Covid, ranging from breathlessness, chest pains and fatigue to nausea, cognitive impairment (“brain fog”) and headaches.

‘Warp speed’

While all this appears positive, dig deeper and you begin to find issues that will present significant challenges for young people who believe they have long Covid - and for their teachers. For a start, no one seems to agree what long Covid is.

“There is no way of diagnosing it [and] no global consensus on what it is among doctors or psychologists,” says Sir Terence Stephenson, from the UCL Great Ormond Street Institute of Child Health (GOSI).

Because of this, a pupil seeking diagnosis may encounter delays and the need for second or third opinions, and ultimately still not get a clear answer. And because of the array of symptoms being reported, a different diagnosis to long Covid is likely. Interestingly, one potential diagnosis as an alternative to long Covid that might occur is ME/CFS or a form of post-viral fatigue (PVF). Might that be a useful comparison for schools?

“We don’t know very much about long Covid in children or adults, other than recognising that there is a group of people who go on having persistent symptoms and there’s a variety of different types of illness that they get, some of which are a sort of ‘post-being-very-unwell syndrome’,” says Vickers. “And [there are] those who have what looks like PVF, which is the sort of thing that is most similar to chronic fatigue - persisting with fatigue, tiredness, aches and pains, and concentration difficulties.”

Shepherd agrees that the similarities with ME/CFS are notable: “Certainly [long Covid] appears to be another strand of post-viral illness, just like ME/CFS or PVF. And a lot of people I have had contact with [who think they have long Covid] and got in touch with the ME Association - I think a substantial proportion meet the diagnosis for ME/CFS.”

However, Elaine Maxwell, content lead for the NIHR Centre for Engagement and Dissemination, is sceptical of putting long Covid under the umbrella of ME/CFS.

“Not everyone who has got long Covid has got ME - some people have symptoms very similar to ME but some haven’t, and I think that is a real challenge to not just go down one route, to not just say it’s PVF or ME [but] it’s a range of different things,” she says.

“Having looked at a wide range of national and international evidence, and talking to people, this is something real and physical, it’s not all psychological and it’s not other conditions by a different name.”

Carolyn Chew-Graham, professor of general practice research at Keele University, is equally wary.

“I think it’s really important we don’t conflate ME/CFS with long Covid,” she says. “By attributing that label, you’re almost saying these are unexplained symptoms but we don’t need to investigate them and we treat them in the same way as we would treat people with ME/CFS. I think it’s wrong to say that because it’s making a jump without investigating.”

Vickers acknowledges this and says he understands that research is showing that there are areas of long Covid that do not overlap with ME/CFS or PVF.

“Some people, particularly adults, with long Covid clearly had quite significant organ damage, which is a very different story from chronic fatigue where, by and large, you find no evidence of organ damage, so I can see why we want to separate it out.”

Evidently, until there is more clarity from the medical profession - and more of a unified voice - it will be difficult for young people to get answers about their symptoms and for a support plan to be put in place.

While a diversity of interpretations from experts is perhaps not surprising, given that they are trying to understand the cause, impacts and potential treatments for a novel disease unknown to science 18 months ago, this puts pupils and schools in a difficult position: when everyday support is not in place, the young person will miss out on their education.

There is some cause for optimism, though. Whereas it took years for the research around ME/CFS to reach the clarity offered by the Nice guidance, work on long Covid is much more focused. According to Maxwell, it’s moving at “warp speed”.

Underlining this is the fact that, in February, the NIHR announced that it was making funding of £18.5 million available for four projects to investigate long Covid, including a £1.4 million fund for a study on the impact of the condition on children - led by Stephenson - that will hopefully shed some more light on the issue for schools.

This research will monitor the health of 3,000 children aged 11-17, who are known to have contracted the disease, and another 3,000, also aged 11-17, who did not test positive for Covid-19 over a three-, six-, 12- and 24-month period.

Using a large dataset of young people with long Covid symptoms should help to provide a more defined checklist of what to look out for. This will be useful for teachers because common symptoms, such as fatigue, brain fog and post-exertional malaise may manifest during or after lessons, at breaktimes or during physical activities (such as in PE), and a teacher may therefore be the first to spot the problem. Until that list is in place, the experts urge schools to watch out for changes of behaviour.

“If a child appears fatigued, or is not concentrating or is tired halfway through a lesson [that could be a sign of long Covid],” says Chew-Graham. “Overall, if a teacher knows a child and notices a difference, that is the key - to spot that change and realise there is a problem.”

If a teacher does spot anything, then the usual process for reporting any concern for a child’s health should apply - whether that means talking to a school nurse, a form tutor, head of year or other appropriate individual, with the hope that it can be raised with parents and, in turn, with a GP or child health specialist, if required.

Of course, though, while teachers may be the ones to spot symptoms of long Covid first, the more common scenario will likely be that long Covid is raised in a telephone call or email to school from a parent explaining why a pupil is absent.

This may not raise eyebrows if the issue is short lived but if it goes on, schools will soon encounter their legal requirements to monitor attendance and, as outlined in the government’s guidance, seek explanations for absences if they are concerned about their “veracity” - including seeking “medical evidence”.

This is the point at which, understandably, headteachers begin to raise concerns.

“How do you determine what is long Covid and what is a refusal to attend?” says one headteacher, who wishes to remain anonymous. “Will there be a correlation between long Covid and pupils who prefer to be at home and their parents prefer them being at home? And, if so, how do you broach that conversation?”

Another headteacher points out: “We’d take an explanation [of long Covid] at face value but, with health-related things, you’d expect to have medical certification, too.”

Obtaining that certification is tricky at this point in time, when so much still needs to be understood about long Covid and medical professionals are not necessarily confident in diagnosing it.

“What we need are doctors willing to make a clinical diagnosis on the balance of probability that a child has long Covid,” says Speight.

“Some GPs will be very aware [of long Covid] but some may have never seen a person with long Covid, or may misdiagnose it as anxiety or as CFS/ME,” Chew-Graham adds.

Elizabeth Whittaker, infectious disease lead at the Royal College of Paediatrics and Child Health, points out that this is why more research is needed to build diagnostic criteria for long Covid. If medical professionals have more clarity on what to look for, this could help to avoid schools and parents being at loggerheads over whether there is a clearly documented reason for absence or not.

“The most important thing is a Case definition [a set of standard criteria for classifying whether a person has a particular condition] - that is missing in young people [for long Covid],” she says, adding that this is something that she hopes research projects like the one being led by Stephenson - which she is also involved in - could help with.

“Collecting research on the symptoms young people are experiencing and looking at patterns in data will mean we can come up with a more accurate definition by, hopefully, the end of summer or autumn,” she says.

This should provide some more clarity for schools, along with the first outcomes of the GOSI research, which are expected by July at the latest.

Get well soon?

But even if long Covid in children is better understood and more readily diagnosed, there is another big issue for schools to consider: how do you then support a child with long Covid? After all, the obvious follow-up question to a diagnosis will be: how long until the pupil is better?

According to Vickers, there will likely be no single pathway for treatment or timeframe to recovery - as is the case for ME/CFS - and any support will, instead, have to revolve around the pupil’s individual needs.

“If long Covid is a type of post-viral fatigue, it is reasonable to take the same approach [as with ME/CFS] - in that recovery is individual, and so the child should be supported to do what they can rather than trying to impose a strict timetable of increasing activity,” he says.

This may well mean that pupils are absent from school. “School is one of the hardest environments to go into [if you’re fatigued],” he explains. “You’ve got to do the cognitive stuff, the social stuff, it’s often busy, noisy, bright and a very high energy-consuming environment to be in.

“So, if you send pupils in then, yes, they’re physically present but they’re educationally absent because they can’t concentrate. They tick a box on the attendance register but they’re not learning.”

Given how long pupils have been out of lessons already during lockdown, it may feel even more worrying to have them absent again, but Chew-Graham says schools must be adaptable.

“Pupils can be offered shorter school days, or time to rest between lessons, or maybe shorter weeks, maybe attending on alternative days,” she says.

Fran Simpson, co-founder of the Long Covid Kids advocate group, also urges flexibility, given the experiences of its members.

“Schools need to be open minded. If a child can manage a couple of hours in the morning but then needs to lie down or work remotely, or can only cope with a number of days a week, they need to think about how to help with that,” she says.

With schools now more adept than ever at delivering remote learning, this should be a feasible solution and one that many school leaders are already on board with.

“It’s better to have kids in school but, for students with health situations, then remote education is a really good alternative,” says one senior leader. “Now, if we had a student who was off for health reasons for a long period of time, where a different model would work for them, we’d be open to that.”

Another leader points out that schools can also draw on their experience of supporting learners with other health conditions to make school more accessible for those with long Covid.

“School always look to phase pupils back in - so if you have a broken leg then, as soon as you’re competent on crutches, we get you back but ensure you have no lessons upstairs, or something like that. With long Covid, perhaps it will be that we would say, ‘OK, you have long Covid but you can [manage] two hours of lessons’. That would mean you have two hours of social contact in front of a teacher,” they say.

Ian Rix, headteacher of Ashley Junior School in Hampshire, says that he has already started to take this approach, making adaptations for pupils with long Covid based on their individual symptoms.

“One child has sore feet due to his illness [Covid toe] and so wears his slippers in the classroom for comfort,” Rix says. “[Or] when a child suffering from long Covid is feeling particularly listless and can’t make it into school, we provide remote learning.”

However, Chew-Graham points out that support will also need to be flexible and that supporting a child with long Covid will likely require a responsive, long-term pupil management programme.

“It can’t just be, ‘here is a six-month plan that is set in stone’ and you assume the child will recover. You need to review it and see what is working - maybe at the end of week, you say, ‘OK, the plan was three days a week but they didn’t manage it; what do we change?’” she says.

“And that involves talking with the school nurse, the teachers, the headteacher, the parents and contacting the GP, or parents getting information from the GP. Or, if the child has been referred to a long Covid clinic, then having information from that clinic.”

It seems clear that the impact of the pandemic will be making itself known to schools for a lot longer yet - from academic catch-up or mental health concerns through to health issues such as long Covid.

But one thing the pandemic has shown us is just how adaptable the education sector truly is. As Rix notes: “Schools are always making adjustments to meet the needs of children - long Covid sufferers are no different.”

Dan Worth is senior editor at Tes

This article originally appeared in the 7 May 2021 issue under the headline “Long Covid lessons we need to learn”