The Office of National Statistics estimates that there are 1.3 million people in the UK who are suffering from Long Covid. Long Covid symptoms have temporarily or permanently altered the lives of thousands of individuals across the globe. With the reopening of offices and schools in the UK and things getting back to normal without any social distancing rules or compulsion to wear masks, it is difficult to imagine how the lives of those with Long Covid will be affected and how they will cope with the pace and demands of their workspaces, families and friends.
Asian Voice attempts to make our readers understand the current status of Long Covid research, how individuals suffering from Long Covid are unable to live a normal life since the UK is not equipped to tackle this health crisis. We spoke to experts and a parent about the impact of Long Covid on children and adults, and the roadblocks in healthcare that are hindering their treatment.
What is Long Covid?
Long Covid is a multisystemic condition. Symptoms vary widely. Common symptoms include pain and Post-Exertional Symptom Exacerbation, in which even minor activity leads to lasting exhaustion. Cognitive dysfunction (commonly known as brain fog), rashes, headaches, pain and stomach upset are common and vary in intensity and duration. Less common symptoms include; loss of mobility, significant visual disturbances, inability to swallow or eat, inability to communicate. Long Covid can occur weeks to months after even mild or asymptomatic acute infection and can last months, in some cases years.
Understanding Long Covid
A champion of Long Covid kids, Respiratory Lead at Health Innovation Manchester and Co-founder of South Asian Heritage Month, Dr Binita Kane spoke to Asian Voice about where the UK stands in understanding Long Covid and why long hauliers need immediate assistance and long term support.
Dr Binita said, “There has been quite an explosion of research in Long Covid among adults. What we're now starting to understand more is that it is not a lung disease as perhaps we originally thought. Actually, we now know it is multi-system disease that affects the blood vessels, which is why it impacts on so many different organs.”
According to Dr Kane, Long Covid may affect the heart the lungs, brain, body muscles because it seems to be a problem of the blood vessels. It can affect really any part of the body, which is why there is such a wide range of symptoms with Long Covid.
“One is the discovery of microclots in the blood. These are tiny clots that don't show up in normal blood tests and scans. So often, people with Long Covid consult doctors, and they undergo a number of blood tests, scans, the results of which come out as normal. And then they get told that ‘there's nothing much we can do because we can't find anything’. But what a group in South Africa found is that there are these tiny little microclots circulate around the blood, and they trap inflammatory materials inside them. And these tiny little microclots, can clog up the very small blood vessels that you need to get oxygen into your bloodstream. So this can explain the fatigue it can explain the brain fog and a lot of the other symptoms that you see with Long Covid,” Dr Binita Kane explained.
She further added, “There is also a theory, that the abnormal inflammation in the body triggers something we call ‘autoantibodies’ that's basically the body attacking itself, and that can cause some of the symptoms that we're seeing.
“The third thing is the little platelets that circulate in our blood, that are involved in clotting when we cut ourselves. We're starting to see ‘hyper-activated’ platelets in Long COVID. They get abnormally sticky, come together and also start clogging up the little capillaries which are vital for oxygen to get into tissues and muscles.”
The fourth theory is around residual viral infection. “The virus just persists in the tissues and the body has not been able to clear it. There are postmortem studies showing that the virus can persist in people's tissues for many months after infection. And if people haven't physically cleared the virus that could then be just continuing to trigger the immune system with this abnormal immune response,” Dr Kane said.
Finally, there's been a lot of discussion about the gut. In people who have Long Covid, because of the problems and the blood vessels, the gut can get leaky. That can also potentially be a source for the abnormal inflammation and the reactions that we're seeing.
Blanket tests not the solution
Dr Kane told us, “We need better ways of understanding on an individual basis, what is going on and then tailoring treatment to them. What we are very clear on, is that whilst blanket tests are important to rule out other causes of symptoms, they are not helping many people because they're not picking up changes at a microscopic level.”
Dr Kane explained that some people get a lot of activation of something called MAST cells that drives a kind of histamine type reaction and allergic reaction.
Hence we could be hearing about people who developed allergic rashes, allergies. So antihistamines are being used to treat those people with some success and there is also a condition called Postural orthostatic tachycardia syndrome (POTS), which is quite poorly recognised but seems anecdotally reasonably common after Long Covid.
Those with POTS witness a jump in heart rate quite significantly when they stand up which is to do with dysfunction of the nerves which may be due to blood capillary problems.
“This is the autonomic nervous system, the one that causes your fight or flight response being hyperactive, POTS can be treated with medications and other measures but many patients are struggling to get a diagnosis. So at the moment it's about finding somebody who understands these different syndromes and can treat the individual, rather than a blanket approach, is what people need in Long Covid,” Dr Kane told Asian Voice.
How will long hauliers start over?
As the UK reopens, offices let go of the work from home model or switch to hybrid, it is difficult to imagine how those with Long Covid will be able to manage their energy and work.
Dr Binita said, “It's extremely challenging, and I think we have absolutely no idea at the moment about the scale of this because we're not measuring it. We are measuring deaths, hospitalisations, and we have some estimates about Long Covid, but we're not measuring the impact it's having on the workforce.
“I work in the NHS, I've seen with my own eyes, how many colleagues now can't work full time or if they've had to reduce their hours or they can't work at all because of Long Covid. Teachers were hugely affected too. But we can't prove the impact because we're not measuring it as a country and I think that the economic damage is going to be huge. I think it’s extremely short-sighted to ignore Long COVID and not be pouring more money into research.
For the individual, the key to recovery in the absence of any miracle cure is there has to be rest and one has to pace oneself to function within energy levels. We know in a significant proportion of people exertion can make Long Covid symptoms much worse.”
The respiratory lead also explained that there's something called post-exertional malaise (PEM) due to fatigued muscles not getting oxygen properly. What is advisable according to science is ‘pacing’. Dr Kane insists that such people need to work within an “energy envelope”. They must know how much energy they have and their tasks and work especially will have to be reduced and adapted to prevent worsening of symptoms.
Brain fog
Dr Kane said, “Brain fog can be very disabling. Some people who require a high degree of cognitive thinking for their jobs are going to struggle. Until we have some treatments that can help this it's going to be a very difficult path for some people to get back into work.”
She added that she’s not yet seen a comprehensive policy coming from the government or employers even within the NHS, about managing Long Covid symptoms. “I think what we need is a comprehensive policy and guidance to support people because actually a lot of people are losing their livelihoods through this and that's a really, really big risk,” the lung doctor said.
A mother’s confrontation with Long Covid
Long Covid is not just her priority because she’s a doctor. Dr Kane’s daughter Jasmin is managing Long Covid.
Dr Binita told us, “My daughter was 10 when she got ill, and it was about 13 months ago. And before that, she was a very bright, happy child. She's lived a normal life, she was very sporty, like doing gymnastics and dancing and swimming. She had a quite mild initial infection, but just never recovered. Her main symptoms now are severe fatigue, So to the point where we have had to buy a wheelchair to help her manage because she can't walk any great distances. If she walks too far she'll get pains in her legs, develop sore throats, ankle pain and she will ‘crash’ if she overdoes things. So we have to manage her energy very carefully.
“She hasn't really been able to go to school properly since April 2021. Jasmin manages at most, a couple of hours, a few times a week. I think what people don't understand is when you've got a hidden illness, and you can't physically do the things as a child that your friends are doing, those children just end up being hidden away because they're at home. They can't socialise with their friends. They can't go to school and it's a very lonely existence. The help and support that's available for them from the NHS is very limited.”
Children and Long Covid
Long Covid Kids support over 10, 000 families worldwide with demand increasing week on week. Most parents worry about other families. They have a strong desire to explain that Covid-19 isn't a benign illness in children; to raise awareness and prevent other families from experiencing the obstacles and challenges Long Covid can bring. Understandably, families, are concerned about the risk of reinfection with anecdotal reports of mixed outcomes from "no change", to "severed relapse" and for some hospitalisation.
Long Covid is not uncommon for children living with Long Covid to receive a diagnosis of a previously defined condition including; Myalgic encephalomyelitis (ME/CFS), mast cell activation syndrome (MCAS) and postural orthostatic hypotension (POTS). We are seeing an increasing number of children will neuropsychiatric symptoms consistent with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS).
Unprecedented levels of Covid infection in children caused a 52% increase in Long Covid in November, and the December figures remain at the same high level. The Office of National Statistics (published 4th Feb) reports that 20,000 children have been ill for over a year and 117,000 for at least four weeks. Since the pandemic began in March 2020, 1 in 100 children in primary schools and almost 1 in 36 secondary school pupils reported an illness that lasted 12 weeks and impacted their day to day lives (Office for National Statistics). This is pre-omicron.
In addition, almost 3,800 children were recorded as Covid-19 hospital admissions in January, with February marking the eighth month of over 1,000 admissions in a row. The numbers of hospitalised children that go on to develop Long Covid are unknown.
While NHS England has established Long Covid hubs for children and young people with ongoing persistent symptoms, families report they are 'unable' to obtain a referral.
The hubs offer a multidisciplinary team approach to care. Children with more familiar, treatable post-viral symptoms are referred to existing support services.
In a statement to Asian Voice, Long Covid Kids said: “Long Covid Kids have created a 'best practice' guide support guide due for release in April. 'Shining a light on Long Covid in Children a guide to Recognition Support and Recovery' will provide support and signposting. The guide will be disseminated widely to educational & healthcare settings and is available as a free download from our website.
“Long Covid Kids firmly believe that it is time to look past prevalence and accept that children do suffer from Covid-19 infection harm. Early intervention and support are key.
“It is pressing and concerning to note that a great many children remain symptomatic 24 mths after infection and report their symptoms significantly impact daily life. Long Covid is a global problem that requires a global approach. We each need to challenge bias and be more curious.
“Our charity is here to welcome, represent and support all children and young people living with Long Covid and related illnesses from every community without exception, including the parents and caregivers that look after them.”
You can visit their website here: Impact | Long Covid Kids
Obstructed access
Long Covid hubs across England are difficult to access. There are long waiting lists for them. Dr Kane says that it's even harder for children to get any sort of treatment because there's little evidence to inform guidelines and research is lagging far behind that in adults. Doctors are reluctant to look a bit deeper, trying to understand what's going on, because it's a child.
“We desperately need the research to ramp up and drive this forward because there are thousands of families and children who are affected and the thing that we don't talk about is the wider impact on working parents. As soon as your child becomes disabled, they need full-time care. This impacts on household income, ability to work as a parent and school attendance. There's no comprehensive schools’ policy at the moment. This means that people are getting a very different experience based on where they live. I've been very lucky our school has been absolutely fantastic, incredibly supportive, but I think it helps that I'm a doctor and I've been able to make the case. But I know there are many children who are really, really struggling with school focusing on attendance. So they're being almost forced to go into school and they're not well enough and that's making some of them worse,” Dr Kane said.
Believing those with Long Covid
For South Asian families, she agrees that it gets even more complicated because firstly, we know symptoms may not be believed as much, especially when it comes to women and children which is historical and comes from structural racial bias.
“There may be a feeling already within communities that we're not going to be believed. I think there is also some stigma around long term chronic illness in some communities that maybe people don't want to acknowledge long-term illness. But then even if you do go and see the doctor, you may not be believed, so the odds are stacked against getting the right help. What we have seen from the national statistics is that Asian and Black people are underrepresented in referrals to Long Covid services. So they're overrepresented in the deaths and disability but underrepresented in getting help,” Dr Kane added.
A doctor battles Long Covid
Lung Doctor, Dr Asad Khan contracted Covid in November 2020. A month later, he developed Long Covid. He now has severe POTS, which makes it very hard for him to stand without getting nauseated or dizzy, and sometimes even makes sitting difficult for him. Dr Khan also has sound and light sensitivity, due to which he can't tolerate light or any kind of sound. He has also developed multiple food allergies. Dr Khan also complains of severe post-exertional malaise. “if I have any kind of physical or cognitive exertion, then for the next 24 hours I have a really bad relapse of my symptoms. I also have quite severe sleep disturbance. I can go 2-3 days without sleep and use quite strong medication to help me sleep,” Dr Asad Khan told Asian Voice.
While the usual advice he received from friends and colleagues was that it’ll get better, in August-September 2021, Dr Khan became severely ill. He said, “I was in a darkened room with earplugs and a blindfold on because I was totally intolerant of light and sound. I have gastroparesis. So my stomach was not working at all. I was losing weight, and I thought I was on my way out basically. This is no life.”
“He then came to Germany from the UK for some treatment. I am on medication and I still have the clots in platelets, although they are better. I've also had a procedure where every cyst in the blood is washed and the clots are removed. I’ve had triple anticoagulation with aspirin, clopidogrel and apixaban in Germany following the finding of hyperactivated platelets & micro clots in my blood. I've had about 13 cycles of that. I've also had six cycles of plasmapheresis which removes antibodies,” he told us.
‘Long Covid is horrendous. It robs you of everything’
These treatments have brought some respite to Dr Khan who has been away from his working wife and school-going who live in the UK. Dr Khan doesn’t visit them often in order to avoid infection and exposure because they still could be carriers of the virus even if he stays at home.
“I am still 50% bedbound which is better than 100% before. I’m basically better but still nowhere near a level of function that would enable me to participate in work or family life. I mean, the illness is just kind of defines my identity now. Whilst I've had really good care in Germany, I think if I had stayed in the UK, people would have had no clue what to do, I would have continued to be dismissed and told that this was psychological and that we had to wait for research before any treatment could be offered when actually, this is a global public health emergency, a lot of people have fallen over a short period of time and they need urgent diagnostics and therapeutics. Exercise and time and psychology are not going to get rid of things like clotting disorders, and autoimmune phenomena. It needs proper science. Unfortunately, it's just been neglected and ignored.
Dr Khan believes that it is a very cynical way of engineering a narrative that the pandemic is over. if you don't test you don't count, then there's no data.
“When it comes to schools, there seems to be this propaganda that kids don't get Covid or if they get it, it's mild. That's false because kids do get it. Long Covid is horrendous. It robs you of everything. For a child, it's heartbreaking. We’re allowing this to happen - this is a crime, it can be prevented very easily, or at least the risk can be reduced.
Besides the need for the government to strongly recommend vaccines for children, Dr Khan feels that schools need HEPA filters in classrooms, which will eliminate the risk of spread between children in the class.
In April last year, ONS declared that 122,000 NHS staff had Long Covid. “This is in the background of an already underfunded crumbling healthcare system, the number is going to be only higher now. I think, now that you will have to pay for a test if somebody gets the illness from work, it's going to be very hard for them to prove that they actually got Long Covid, If they develop the symptoms,” he added.
