Temperature checks, handwashing, social distancing. Isolation, tests, tracking close contacts.
Those working in schools know the drills around Covid-19 better than most. When it comes to the prevention of infection – and the response in the immediate aftermath of a suspected or confirmed case – education has it sorted.
However, how far can the same be said for the potential long-term repercussions of being infected with Covid-19?
Long Covid: what you need to know
In the months following the outbreak of the coronavirus, people who should have recovered from Covid-19 reported that they were experiencing ongoing symptoms.
And it wasn’t just those hit hardest by the virus and who ended up in hospital who were suffering: those who had only mild cases were also experiencing stubborn fatigue, breathlessness, “brain fog” and myriad other issues.
In time, these varied prolonged symptoms were collected under a single label: “long Covid”.
What is long Covid? How common is it? How much of an impact could it have on the way schools operate?
At such an early stage of the pandemic, there are few clear answers.
However, there are plenty of clues that school staff and parents can begin to use in order to make a plan – and they definitely do need to make a plan, as this condition will affect teachers, pupils and their extended social contacts.
What is long Covid?
The first thing you need to know about long Covid is that it is an umbrella term. Two patients can report very different symptoms, but both can be referred to as having long Covid.
In written evidence to the Commons Science and Technology Select Committee, Professor Trisha Greenhalgh, Dr Matthew Knight and Dr Deepak Ravindran stated that “people with long Covid experience a wide range of persistent (and often fluctuating) symptoms including cough, breathlessness, fatigue, fever, sore throat, chest pains ('lung burn'), cognitive blunting ('brain fog'), muscle pains, anxiety or depression, skin rashes and diarrhoea”.
They added that “control of chronic conditions such as diabetes, inflammatory bowel disease or rheumatological conditions may deteriorate”.
To be clear, not everyone gets all of these symptoms – some may only get one or two; others may get many.
But within that variation, the Covid Symptom Study found that it is possible to group patients into two broad symptom categories: “One was dominated by respiratory symptoms such as cough and shortness of breath, as well as fatigue and headaches,” its report states. “The second group was ‘multi-system’, affecting many parts of the body including the brain, gut and heart.”
The added complexity here, of course, is that many of these symptoms can occur owing to other viruses or causes: a sore throat can be caused by cold viruses, bowel spasms from anxiety.
So the clinicians and scientists talk about persistence of symptoms.
A British Medical Journal review defined that persistence as follows: “Post-acute Covid-19 as symptoms lasting 3-12 weeks and chronic Covid-19 as symptoms beyond 12 weeks.”
What is causing the continuation of symptoms?
The short answer is: we don’t know.
“We really don't understand the mechanisms underlying what we are seeing,” explains Nisreen Alwan, an associate professor in public health at the University of Southampton. “There might be multiple mechanisms under the big umbrella of long Covid.”
Alwan herself is experiencing ongoing symptoms of long Covid and has written extensively on the topic for numerous publications, including the BMJ.
She says that the only way we are going to find out exactly what is going on for each individual, and get a better idea of whether this is one or multiple conditions, is better identification of those who have not “recovered” from the virus.
“We need to define who hasn't got long Covid by defining what we class as someone who has completely recovered,” she explains. “If we say, ‘have you recovered, are you back to whatever level of health you had before the infection?’, we can then analyse the group who does not class themselves as recovered.”
The BMJ recently ran a webinar on long Covid, which you can watch below:
Academics and medics are feverishly trying to pinpoint causes for long-term issues, but the huge array of symptoms and the limited access to scans and other diagnostic tools makes getting firm answers tricky.
In his podcast for BBC Radio 4 on long Covid, Dr Adam Rutherford interviews numerous experts looking into biological causes for the problems experienced, but as yet there is little concrete to cling to.
On breathlessness, for example, Professor Gisli Jenkins explains to Rutherford that the usual tests to investigate breathlessness are not throwing up the causes they would expect to see – for example, “chest X-rays would be normal, or near normal, and the CT scan will show, if anything, very mild abnormalities”, he tells the podcast.
That said, he has found some abnormalities in some patients when it comes to gas transfer in the lungs. He explains that his concern is that this could be causing the breathlessness, although “it should be detectable on a CT scan of the lungs, but we’re not seeing a lot of scarring at the moment, which is very good news”.
What's it like to live with long Covid? A teacher reveals her story
An attempt at defining causes, though, has come from a recent review from the National Institute for Health Research, which suggested that long Covid may, in fact, be four different conditions:
- Permanent organ damage to the lungs and heart.
- Post-intensive-care syndrome.
- Post-viral fatigue syndrome.
- Continuing Covid-19 symptoms.
Are ongoing symptoms after a virus unique to the Covid-19 virus?
No. Post-viral fatigue syndrome (PVFS) is an existing condition – this is where people can get a virus and have persistent issues for up to three months.
Most people will recover during this period, but for some, the symptoms will continue beyond three months and if it persists for more than four months, it is seen as a chronic condition.
“There's always been a subset of people who get particular viruses and who do very badly afterwards,” explains Dr Gerald Coakley, a consultant rheumatologist and specialist in post-viral and chronic fatigue. “And so that's always been a feature of viral infections, we've known about it since long before Covid-19.”
Symptoms of PVFS are similar to those of long Covid.
Symptoms of chronic fatigue syndrome (CFS, or ME) are also similar – this has an unknown cause but some theories do suggest that it is instigated by an infection or virus.
“Symptoms tend to be exhaustion, both physical and mental,” says Coakley. “People can have problems with memory and concentration. One of the hallmarks of PVFS and ME/CFS you look for is post-exertional malaise, so if you do more physical activity or exercise than usual or you do a lot of intellectual work, then there's a payback for days afterwards with more severe exhaustion.
“Another common feature of PVFS is poly-symptomatic distress: patients in this category have numerous physical symptoms, which are bewildering to them and to doctors alike. So they will report, for example, restlessness, their heart racing, feeling faint, feeling dizzy or tingly and numb, or having irritable bowel symptoms. Unsurprisingly, people experiencing many symptoms like this feel anxiety, which in turn can drive more physical symptoms.”
How similar to long Covid is ME/CFS and PVFS? Many experts in the latter say that early indications are that there are very close similarities between them.
“I've been dealing with PVFS and CFS/ME for 20 years and in many respects, the kind of symptoms I'm hearing about from people with long Covid are very similar,” says Coakley.
There are claims that inflammation of the heart, lungs and brain that occur with long Covid are unique, but Coakley says it is impossible to know that because research into ME/CFS and PVFS has been so underfunded.
Dr David Vickers, medical director at Cambridge Community Services NHS Trust and a specialist in paediatric ME/CFS, agrees that research is lacking for PVFS but states that similar inflammatory issues can occur in other post-viral conditions.
He adds, though, that with long Covid or any other post-viral conditions, we have to be extremely cautious about interpreting these effects.
“The reported inflammation of the brain, the inflammation of the heart, seen in long Covid – these are things that do happen with other viruses but we don’t tend to go looking for them,” he says. “With long Covid, people are [looking] so we need to be cautious about what we are seeing at the moment – it will take time to really understand what is a cause and what may be a normal variation, or a normal reaction to a virus.”
So why is long Covid being seen as distinct from PVFS and ME/CFS?
“It's premature to put it in that [PVFS or ME/CFS] box now, as we really don't know exactly what long Covid is,” states Alwan. “Some of the features are similar, but there's a very wide range of symptoms people with long Covid are experiencing and some of those people don't have any fatigue. They may have heart symptoms of neurological symptoms or respiratory symptoms.”
She adds that ME/CFS is a neglected condition that has not been properly investigated, so making comparisons at this point is likely to be inaccurate.
However, it’s also important to note that there are huge misconceptions around ME/CFS that those with long Covid are keen not to see attributed to their symptoms, too.
ME/CFS has been continually written off – even by some in medicine – as a “made-up” or “psychological” issue because biological triggers for the issues have yet to be found. This can see patients maligned rather than supported.
“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,” says Coakley. “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.”
Vickers puts it more bluntly: “Frankly, anyone saying this is a psychiatric diagnosis is being very, very simplistic.”
Faced with this – and the huge number of ME/CFS patients reporting a struggle to be taken seriously – it’s no surprise that the comparison between long Covid and ME/CFS is one many long Covid suffers are keen to avoid.
How prevalent is long Covid and how does that compare with ME/CFS and PVFS?
Ascertaining prevalence of long Covid is extremely tricky because it’s likely that there are many people with symptoms who are not reporting them and many who – because of a lack of testing at the start of the pandemic – do not know they have had Covid-19 and thus may not attribute ongoing symptoms to having had the virus.
The written evidence from Greenhalgh et al mentioned earlier suggested that 10-20 per cent of Covid patients remain unwell after a period of three weeks, and 1 per cent are significantly unwell after 12 weeks. They estimated at the time (end of September 2020) that around 60,000 people had long Covid.
The Covid Symptom Study found a similar picture. Researchers believe that 14.5 per cent of people will have symptoms lasting at least four weeks, 5.1 per cent of people will have symptoms for up to eight weeks, around 2.2 per cent of people would be unwell for longer than 12 weeks.
Alwan feels these figures may not be accurate, though.
“The truth is: we really don’t know prevalence at this point,” she explains. “The current (but few) estimates of how common symptoms persist beyond a couple of weeks vary widely by type of study and sample and lie between 10-40 per cent among non-hospitalised Covid-19 adult patients.”
As for prevalence among school-age children, Alwan says she has not seen “any quantification”.
The Covid Symptom Study has tried to put some age predictions on the likelihood of getting long Covid, alongside other factors that may make people more vulnerable.
It believes prevalence is around 10 per cent in the 18- to 49-year-old bracket and 22 per cent in the over-70 bracket. It believes that those with higher BMI, women and those with asthma are more likely to suffer, too.
However you look at it, it’s likely most schools will have a teacher already suffering, or who will begin to suffer in the coming months.
What about under-18s? There is anecdotal evidence of cases in this age group (see this BMJ blog) but little in the way of hard evidence.
Some have made comparisons with ME/CFS and PVFS to try to work out what prevalence might be in both adults and children, but Coakley says that for adults this is unlikely to be helpful.
“The Medical Research Council estimated that there were 250,000 people in the UK with CFS/ME when it launched its pioneering DecodeME study in June 2020,” says Coakley. He believes that even if 60,000 people is an underestimate, it would still be “far more than we would have in a normal year for PVFS and CFS/ME”.
As for cases of ME/CFS and PVFS in children, Vickers says cases are far fewer among under-18s and he sees no reason for that not to be the case with long Covid, too.
“I think the number of children impacted with long Covid will be far smaller than the adult group,” he says. “With ME/CFS, you can see that the number of children with it is far lower than adults with it, and there is no reason to believe it will be different for long Covid. And again, we see that children are less severely affected by Covid-19.”
As for age groups, he says the majority of the patients he sees are secondary age.
“Perhaps a third are from the upper end of primary school,” he says. “Younger than that is much less common – I would say five years old is the youngest I have seen. It is very tricky at younger ages and below that age the diagnosis is complex as young children are often naturally fatigued if they are, for example, doing full days at nursery.”
What needs to be stressed at this point is that the vast majority of people will recover from Covid-19 either after the initial infection, or within three months. Very few develop longer-term symptoms.
How is long Covid treated?
Treatment is a thorny area when it comes to conditions where biological causes are undetermined. For ME/CFS and PVFS, it’s the reason there can be so much misunderstanding among the general public. Because for the most part, treatment is psychological in nature.
“There is no tablet or injection we can give people to cure them,” says Vickers. “So it becomes about managing the symptoms, about helping people get on productively with their life despite those symptoms.”
Jo Daniels, senior lecturer at the University of Bath and a specialist clinical psychologist, is one of the leading experts in the treatment of ME/CFS and PVFS in the UK and sits on the NICE guidelines panel for ME/CFS. She believes the use of psychological treatment in medical conditions is widely misunderstood.
“We need to debunk the myths that are out there,” she says. “Psychological therapy is useful for a range of medical conditions, with a strong underpinning evidence-base supporting its use.
“The use of psychological therapy does not by any means infer a psychological or psychiatric root cause, but rather an acknowledgement of the fact that living with a long-term condition is very distressing and very disabling.”
Key among the strategies used for ME/CFS patients is cognitive behavioural therapy (CBT).
“Psychologically based therapies such as CBT have a strong evidence base for supporting people with medical conditions to adapt to and manage their health,” Daniels explains. “Psychological therapy does not infer that a physical experience is psychological, it suggests that physical health problems can be distressing.
“The point of CBT is to improve quality of life and reduce psychological distress. The main focus isn’t to ameliorate physical health symptoms, although this is a common misunderstanding. We do see improvements in symptoms, but this is not the primary target.”
She believes CBT may be a useful treatment for symptoms associated with long Covid, too.
“I would expect to see anxiety and depression emerging in those with long-haul Covid; that would be a very understandable response to suffering a very unpleasant illness and then living with protracted symptoms of unknown duration. CBT is likely to be useful in Covid-19 long haul as it would be in other medical conditions.”
The services for ME/CFS and PVFS for adults are well established in the NHS, if badly funded according to some in this sector, but the services for children can be more difficult to come by.
“A diagnosis depends on a knowledgeable GP and access to a service like ours,” says Vickers. “Not everyone can navigate the system to get the help they need.
“If the GP support is effective, then most children with post-viral fatigue can be managed without attending a service like ours and they will recover within a couple of months. Most children fall into this category. But a small proportion have symptoms beyond four months and that is when they will need further treatment and to come and see specialists like us.”
The ME/CFS treatments are largely the same for this age group as with adult patients.
But despite experts stating that treatment for long Covid may have many similarities to ME/CFS and PVFS, there has been a concerted push to separate long Covid from ME/CFS, not just in terms of similarities of condition (as stated earlier) but to create a distinct treatment pathway.
The Greenhalgh et al evidence states that current long Covid treatments are highly variable and not up to standard in terms of referral, acknowledgement or treatment. The researchers concluded that a new service needed to be established for long Covid, with four tiers of intervention and multi-disciplinary teams involved (you can read about this in more detail here).
Coakley and others also believe existing ME/CFS services will be quickly overrun with demand from the influx of long Covid patients.
The NHS seems to have listened: it has stated that it will invest in creating local long Covid clinics to provide bespoke treatment.
However, Vickers says that a separate pathway may not be the way forwards.
“I am not convinced that defining long Covid differently to ME/CFS is the right decision,” he says. “I can understand why there is a desire to remove long Covid from the controversy around ME/CFS, so long Covid does not inherit the history of problems ME/CFS has. But from a treatment point of view, long Covid is going to be the same treatment as ME/CFS. So why would we split it up?
“Does ME/CFS become a secondary concern? Do patients end up getting batted between long Covid clinics and ME/CFS clinics, because neither thinks they quite qualify for each? I can understand the desire to designate it as separate, as I said, but I am unconvinced that it is the right answer.”
How can schools support teachers?
Clearly, as extensively laid out above, there are more unknowns than knowns about long Covid. And clearly diagnosis, treatment and long-term outlook will take time to get right.
School support for teachers with long Covid will therefore be crucial.
The first thing Alwan would stress to school leaders is that the absence of a positive test for Covid-19 does not mean a teacher does not have long Covid (and the same goes for pupils; see the next section for more on them).
“Many of the people we have now who are experiencing long Covid weren't tested if they weren't admitted to hospital in the UK – tests in the community simply were not available,” she says. “So, most of them will not have that positive active virus test. So it is important that if a pupil or teacher tells a school that they have long Covid, headteachers are aware of the limitations of access to testing.
“Also, the PCR [polymerase chain reaction] test is not 100 per cent accurate – between 10-20 per cent can give false negative results. Even when a test was accessible, the timing of that test really matters. It could be that a test was negative simply because of the timing within the infection period – if too late after developing symptoms, they may test negative despite having Covid.”
The next thing for schools is to simply believe the teachers: too many sufferers with ME/CFS face suspicion or even being mocked and there are fears long Covid will fall into the same pattern.
“If you don't have some objective proof, then some people are disbelieved and not recognised and that really does make that person’s situation much worse,” says Alwan. “So from a school perspective, they need to recognise that this exists and there are a lot of people experiencing it and we still don't fully understand it. It's important to believe the stories because this is a real thing and it's happening.”
Thirdly, Daniels feels schools really need to try to understand the individual pathway these teachers will be on.
“Long-haul Covid appears to be taking different forms so a one-size-fits-all approach is unlikely to work well,” she says. “What’s really very important is that heads view every teacher who has long Covid on an individual level and case-by-case basis, and that they ensure the relevant services are involved. Occupational health involvement can be very useful, as can GP input.”
She says that heads should be particularly cautious around return to work plans.
“We have seen in other post-viral syndromes that a premature return to work is often problematic,” says Daniels. “We should resist blanket timeframes as a school or comparing individual teachers progress and assuming recovery from long Covid will be anything like what we have seen before. We just don’t know enough yet.
“What is important is that people are empowered to make decisions about their own bodies and behaviour; while we are learning about this new condition, those suffering need support, understanding and validation if they are to achieve whatever recovery is possible.”
Coakley agrees that schools should be led by the teacher as to what is possible.
“My main message for employers – for heads – and also for teachers when it comes to pupils is that you need to be really aware that this illness needs time, that work/school hours will need to be reduced, because if you force people back they will not recover as well. But if you treat them well and you are willing to adapt and make adjustments, you can help them get better, to heal and to reintegrate back into work,” he says.
How schools should support pupils?
“It's amazing, the negative impact of a random teacher at school saying, 'Oh, you’re just making it up' or 'You’re making a fuss about nothing' – most teachers don't do that but it does happen and it can be the very worst thing to say to a child with ME/CFS,” reveals Vickers.
For the most part, the support plan for students with ME/CFS mimics that of adults above, but often school-age children can face more of a struggle to be acknowledged and diagnosed with post-viral conditions and the expectation is that it will be a similar struggle for long Covid.
“Unfortunately, ME/CFS can get lumped together with school refusal and then it can take a lot of time for the two to be separated out,” says Vickers. “So it’s true that it can take some time for children to be diagnosed and that can cause issues with schools.”
Daniels agrees that schools mistaking post-viral conditions to be school refusal is a real issue.
“We hear a lot that children are often mistaken for school refusers, with not enough time taken to consider what the underlying problem may be,” she says. “Depending on their cognitive and emotional developmental stage, some children may find it difficult to articulate their internal world, what is happening in their bodies and their emotional experiences. Which means it is harder to immediately establish what is going on for that child.
“What we can sometimes see in fatigue is that children can appear to become withdrawn, they may seem like they're being difficult by refusing to engage in activities such as PE for example, or in the classroom. Whereas they may actually be experiencing fatigue, and a range of symptoms that they have no words for.
“Children may often complain of feeling tired or having tummy ache, so it can be a challenge to differentiate what is normal childhood bodily variations, mood related or physical.
“Looking out for a definite ‘change’ in behaviour can be a helpful clue, particularly post virus. Active monitoring is important, particularly as we don't know yet how/if children will be affected by Covid in a long-haul way as adults are.
“We must be vigilant to signs of ongoing illness in some form or other and consider the possibility that they may be developing Covid long haul. Involvement with other services such as the GP or paediatrician should be considered if ongoing physical symptoms are present.”
Vickers says that schools need to understand that they need to be flexible with these pupils.
“We always try and work with schools – we try and find a way of getting the child access to school in a way that means they don’t get a broken experience, but that they come in for maybe an hour per day, but that they do the majority of their maths and English by doing this, for example,” he says.
“What you don’t want is: the pupil comes in for the start of the day each day, because if that lasts one hour then they get this really broken curriculum. We need to make school make sense within the limitations the child has.”
He stresses that pupils need this support straightaway, often before a diagnosis occurs as that diagnosis takes time, because the window of intervention that can be impactful for these students narrows quickly.
“Within the first four months, it is really important teachers are sympathetic and schools are flexible. They need to be proactive: let's do a reduced timetable, let's send work home, let’s listen to the young person about what they can do,” he says.
Long Covid numbers will increase the longer the pandemic continues and the longer this virus persists. Thankfully, the issue has been acknowledged early and researchers are already progressing their understanding of long Covid every day. In the future, we should have better diagnosis, better treatments and better outcomes for those who suffer with it.