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Brain fog, extreme fatigue, depression, anxiety, nausea, dizziness, heart palpitations, chest pain – these are just some of the known symptoms of long Covid.
It’s a debilitating illness associated with coronavirus about which there is still so much to learn.
What is long Covid?
It can take people different lengths of time to recover from coronavirus, with full recoveries often seen within 12 weeks.
However, some people find their symptoms last longer than the initial coronavirus infection and become what’s called long Covid or post-Covid syndrome.
While there’s still much to learn about long Covid, the NHS website states that how badly ill you get with coronavirus does not seem to dictate whether or not it will turn into long Covid.
In fact, Dr. Brian O’Connor, Consultant in Respiratory Medicine and the lead for the newly-launched long Covid clinic at Cromwell Hospital, tells us most of the people they see there with long Covid are people who had mild symptoms of coronavirus.
He says: ‘These tend to be the younger, dynamic individuals ranging from mid-20s to mid-50s.’
Symptoms of long Covid, according to the NHS:
- Joint pain
- Depression and anxiety
- Tinnitus, earaches
- Difficulty sleeping
- Heart palpitations
- Pins and needles
- Feeling sick, stomach aches, diarrhoea, loss of appetite
- A high temperature, sore throat, headaches, cough, changes to sense of smell or taste
- Extreme tiredness
- Shortness of breath
- Chest tightness or pain
- Problems with memory and concentration (“brain fog”)
When it comes to symptoms, brain fog deserves a special mention as it’s so commonly reported and can be debilitating.
Dr Emer MacSweeney, Consultant Neuroradiologist at Re:Cognition Health, explains: ‘Brain fog is not a medical condition, but a combination of relatively common symptoms affecting our cognitive processes, or more simply put, our “thinking ability”.
‘Medical conditions that are often associated with brain fog include chronic fatigue, fibromyalgia, multiple sclerosis, hormone changes through pregnancy and menopause, hypothyroidism, lupus, coeliac disease, depression, chronic migraine and stress, to name but a few.’
She adds: ‘There are many physiological and psychological mechanisms that could be influencing brain fog in recovering Covid-19 patients. From post-inflammatory and oxygen related changes in the brain to anxiety, breathing difficulties, stress, lack of sleep and many other contributing factors; we are learning more about the virus every day.
‘Understanding brain fog in the context of Covid-19 is certainly receiving a great deal of scientific and clinical attention at present. Especially as it seems to be a common complication of the infection.’
Why do some people get long Covid and not others?
It’s not yet known exactly why some people develop long Covid and others don’t, but doctors have a number of theories.
Dr. O’Connor says: ‘A particular theme we’re seeing with these individuals is that they’re returning to a very active lifestyle too quickly after having Covid-19, such as going back to work full time or taking up high intensity exercise. This could potentially be a reason why they are suffering from long Covid.’
He adds: ‘The most common demographic we’re seeing in our clinic is women, aged between mid-20s to mid-50s. These women tend to be high achieving and often have children.
‘Again, the reason they perhaps suffer most with long Covid could be due to the fact they’re returning to a full-on lifestyle too quickly and not allowing their bodies to recover.’
This is particularly interesting given that many women, especially working mums, have had to endure an unbalanced domestic workload during the course of the pandemic.
Sano Genetics, an organisation that specialises in genetic research and DNA sequencing, is currently working to investigate from a genetic angle.
Dr Patrick Short, the company’s co-founder and CEO, explains: ‘We are collaborating with 100+ researchers around the world to answer the question: how do our genetics impact long Covid symptoms and recovery?
‘We’re sequencing the DNA of up to 3,000 people who have experienced symptoms of long Covid lasting longer than three weeks to test a hypothesis that it is an autoimmune disease, like irritable bowel disease or multiple sclerosis.
‘We are looking for genetic markers that tell us why some people develop long Covid and others do not.
‘We are also looking whether there are genetic markers that predict different symptoms or subtypes of long Covid, and whether there are particular genes or proteins that would be good targets for long Covid therapies.
Dr Short says: ‘It may be that several things are playing a role’ (Picture: Getty Images/iStockphoto)
‘Important findings from this project will be shared openly, so the worldwide scientific community can work together on COVID-19 solutions’
He adds: ‘So far, there has been no large-scale genetics study of long Covid, although genetics studies focused on severe acute Covid (e.g. hospitalisation) have found genetic signals, so we have strong reason to believe that there will be genetic predispositions toward long Covid.’
There are several other theories, including that inflammation of small blood vessels and hyperinflammation in organ systems could be to blame.
Dr Short says: ‘It may be that several things are playing a role, or are responsible for different subtypes of long Covid.’
He adds: ‘One of our collaborators Dr David Strain, Senior Clinical Lecturer at the University of Exeter, was the lead on the Covid ward for older adults at the Royal Devon & Exeter NHS Foundation Trust.
‘David is investigating the links between long Covid and chronic fatigue syndrome, and how alterations in patient microvasculature in the brain, heart, and rest of the body may play a part in both conditions.’
Exactly how ‘normal’ coronavirus turns into long Covid also remains unknown.
‘This question is still very much unanswered,’ Dr. Short tells us, ‘and a big part of what we and others working on research in this area are hoping to answer. However, there are a few important findings or hypotheses.
‘One important finding that came out in late 2020 and has been supported by follow-up work in 2021 is that people with long Covid can display high levels of autoantibodies.
‘These are antibodies that the body produces to attack itself, and are a hallmark of many autoimmune conditions, such as lupus or multiple sclerosis.’
What it’s like to have long Covid
Dr Badia Ahmed, a histopathologist with long Covid, first displayed coronavirus symptoms in May.
‘I had muscle pains, fatigue, a mild cough, breathlessness and my heart rate was fast,’ says Badia, 31.
‘I felt unwell; that malaise feeling when you get the flu. At one point, it became painful to breathe in through my nose, and then I lost my sense of smell.’
As I realised I wasn’t getting better, my mental health deteriorated
Badia, who works at a London hospital, says the muscle pains and malaise went away, but the rest of her symptoms have yet to completely fade, and it’s taken a toll on her mental health.
She says: ‘I thought I had somehow been infected with Covid-19 again, but the test was negative.
‘I can’t remember a specific moment I was diagnosed with long Covid, but my own personal realisation was in August that I wasn’t going to recover, not on my own at least.
‘As I tried to deal with these physical problems and realised I wasn’t getting better, my mental health deteriorated.’
Now, she’s on heart medication and seeing a specialist cardiologist for heart problems, as well as suffering from brain fog and fatigue.
She explains: ‘If I overexert, I get a relapse where I feel unwell with malaise and muscle aches.
‘My heart rate is being controlled by medication now. I’ve been diagnosed with inappropriate sinus tachycardia where my heart rate is fast but it’s also a syndrome beyond that.
‘I’m getting specialist physiotherapy to help with the kind of breathing problem I have – “dysfunctional breathing” – which also seems to be associated with this type of heart problem.
‘I’ve been privileged in being able to get appointments through the private route. I’ve been able to get help from my GP, various specialist doctors, a primary care mental health team, physiotherapy and occupational therapy.’
Faye recently marked the one-year anniversary of the day she first got sick (Picture: Faye Wilson)
Faye, from Chatham, Kent, used to work a ‘great’ and intense job as a corporate intrapreneur with a large blue chip retailer.
Then she got sick in March of last year, and has, a year later, been left suffering from brain fog and ‘debilitating fatigue’ that’s meant she’s unable to work and struggles to care for her two children.
Faye first fell ill before coronavirus antibody tests were widely available, but she says multiple doctors have said it’s highly likely her symptoms were caused by coronavirus.
‘I used to be fit and healthy, working full time, commuting into London every day and enjoying an active social life,’ she explains.
‘Now I am unable to work and suffer from really debilitating fatigue which means that I struggle to look after my two children.
‘I’m only 43 so am pretty devastated that my whole life has changed so drastically by this virus.’
She was taken to hospital three times in May and June because of blood clots in her leg and a suspected clot in her lungs, and her doctor has diagnosed her with myalgic encephalomyelitis, also known as chronic fatigue syndrome.
I could read one fiction book a week before I had Covid-19. When things are bad, I can barely pay attention to ten minutes of TV.
‘It was pretty traumatic for my young kids to see their mummy taken away in an ambulance,’ she tells us.
It’s not just adults who’ve been struck by long Covid.
Prior to getting coronavirus, Isabel, 10, was an incredibly active child – taking three dance lessons, two gymnastics lessons and one Taekwondo lesson a week.
Now, she relies on a wheelchair to go outside and is so badly mentally and physically fatigued that she doesn’t have the energy to do much more than lie on the sofa.
Isabel, who lives with her family in Doncaster, Yorkshire, has been ill since October, when she first started showing symptoms of what her mother, Catherine, thought was just a cold.
Catherine was the first in the family to show symptoms before it spread to her husband, her 12-year-old-son and Isabel.
Previously fit and active Isabel now relies on a wheelchair to leave the house (Picture: Catherine Walton)
Catherine, 46, explains: ‘The symptoms were generally feeling “off it”, tired, achy, sore throat sniffly nose – like a cold. No temperature, felt hot and had goosebumps, but used three different thermometers regularly and couldn’t get a reading above 37 degrees, so didn’t have any of the three symptoms to be able to get a test.
‘A few days after the start of his symptoms my husband totally lost his taste and smell. He went for a test which was positive but the rest of us still couldn’t get a test and didn’t have any of the three symptoms.’
While the rest of Catherine’s family eventually got better (even though her husband didn’t regain his senses of taste and smell for two months) Isabel ‘never felt right’ afterwards.
‘She was very tired and had a bit of a tummy ache,’ says Catherine. ‘These symptoms got progressively worse over the next few weeks.
‘Doctors would tell me it’s very unlikely to be long Covid, it’s extremely rare in children.
‘I asked the GP for an antibody test, but she said there’s no point as she’d had a colleague swab positive but then later had a negative antibody test.’
Isabel didn’t get an official long Covid diagnosis until March 8, after she was eventually able to take an antibody test, which was positive, and have a chest x-ray, which showed she had lung damage.
Isabel taking part in a dance competition before she became unwell (Picture: Catherine Walton)
Dr Ahmed gets occasional tastes of normality, but her body punishes her if she pushes too hard.
‘I need to plan out periods of rest, which is new for me,’ she tells us.
‘I’ve kept an activity diary, but I still can’t fully predict whether I will be able to function normally. I get so tired and the brain fog gets worse with the low energy levels.
‘Any kind of physical, mental or emotional exertion can fatigue me or even trigger a full-blown relapse which feels worse.
‘I used to have much better concentration and focus; I could read one fiction book a week before I had Covid-19. When things are bad, I can barely pay attention to ten minutes of TV.
‘My memory is less reliable. I prided myself on paying close attention to details, and it frustrates me how difficult this can be now.
‘I can’t contribute to the housework very much. I can’t even look after myself that well. I haven’t been able to sort out healthy food or exercise much, so I’ve gained 15 kilograms of weight and my cholesterol is raised.
‘Some days, I am on one spot on the couch all day, once I’ve managed to drag myself out of bed. Some days I can do a bit of exercise. Some days, it feels like an effort just holding up the TV remote for a moment.’
She adds: ‘I have a lot less energy to give. I used to mostly look after the people I love, and now they have to look after me.
‘I told everyone I didn’t feel up to doing Christmas cards or gifts; I just didn’t have the capacity.’
Faye has to pay close attention to how she spends her energy too, saying: ‘Every day I have to think about my energy levels and what is most important to use my very limited energy on.
‘Having such limited energy levels really makes you think about every little thing you do, whether its moving, thinking or feeling because everything takes energy, even talking to friends, watching TV or feeling emotional.
‘I have also been left with many new allergies that I didn’t have before Covid. I’m now allergic to around 20 different food items which means that I can no longer eat Indian, Chinese, Thai, Italian or Mexican food.
‘My doctor thinks that the cytokine storm caused by Covid has left my immune system on high alert causing all these new allergies.’
Some days, it feels like an effort just holding up the TV remote for a moment
As for work, thankfully Faye’s husband has been able to work from home and has been able to play a big part taking care of their kids.
She explains: ‘He is a key worker and has been incredibly busy since the start of the pandemic as he helps to keep a major supermarket’s online store running, and so has been really stretched – especially last March and April when I was really ill, and he was working ridiculously long days to keep the online store up and running.’
Dr Ahmed has, after many months, just recently been able to arrange and cope with a phased return to work, but she’s had to make ‘many adjustments’.
She says: ‘I haven’t been able to fully return to my research work yet as part of a Masters I was also undertaking.
‘Thankfully, I’m a permanent NHS hospital doctor therefore I’ve been given paid leave and work have been supportive. I have friends who are doctors that are not so lucky, like locum doctors that were temporarily brought in to fill rota gaps.
‘I have friends who are GP colleagues who’ve lost their jobs and GP partnerships after being unable to return to work for six months.
‘Some fellow doctors have turned to organisations like the Royal Medical Benevolent Fund for financial help while struggling with long Covid.’
Isabel with her mum Catherine (Picture: Catherine Walton)
These days, Isabel suffers from severe stomach pains, nausea to the point where she struggles even to brush her teeth, palpitations, shortness of breath and ‘post-exertion malaise’.
Catherine, who is a senior buyer for the NHS, tells us: ‘It is extremely difficult. She is only managing to go to school for 30 minutes as just the exertion of getting dressed takes a lot of energy. Therefore, she is hardly doing any school work, and I’m very worried about her education and what she is missing, however her health has to come first.
‘We’re very lucky in that we work from home for the majority of days, but my job is full on and therefore Isabel has to amuse herself with the TV etc, which makes me feel very guilty that she’s ill and left alone in the lounge for most of the day.’
She adds: ‘She spends all day (apart from 30 minutes at school) laid on the settee. She doesn’t have the physical energy or mental capacity to do much else.
‘Most days my husband has to carry her up the stairs to bed as she has no energy left. To get out for fresh air she has to use a wheelchair. She struggles to get to sleep for hours after her usual time due to stomach pain.’
When it comes to recovery, the road ahead is not clear.
Catherine has been told the fact that her daughter was so physically fit before she fell ill ‘stands her in good stead for a better recovery’, but also notes: ‘No one has said when or if she will fully recover’.
Faye, who’s documenting her long Covid journey on Instagram, is attempting Biohacking – a broad term that effectively describes the attempt to optimise your body’s performance – to aid her recovery, chiefly with food.
She says: ‘I have completely changed my diet as food is incredibly important for health. I now only eat a paleo diet and have cut out all carbs, processed food, alcohol, caffeine, sugar, dairy and gluten. It has helped me to gradually improve my health, although it is very hard to stick to it sometimes.
‘I now also take a great many vitamins and supplements to help strengthen my gut microbiome, and to both calm and strengthen my immune system.
‘Over last nine months, I have been very, very gradually been able to increase my activity; I am now around 50 to 60% back to normal.
‘This has not been a linear recovery, but has involved many, many setbacks and many moments of very real, and very deep, despair.’
On the possibility of her recovery, Dr Ahmed says: ‘Nobody knows when or if I will fully recover. There’s been some slow improvement. We’re all hopeful.
‘To be honest, I have had a difficult time holding on to that hope.’
However, she is thankful that her condition isn’t worse, as she’s seen other friends suffer even more severe symptoms.
‘I look to many friends with long Covid who have more disabling symptoms,’ she says, ‘friends with long Covid from the first wave who haven’t been able to get the help they need yet and how unwell I was with long Covid at the start of my journey; I realise it could also be worse.’
What can you do to feel better if you’re suffering from long Covid?
If you are suffering from long Covid, Phil Day, superintendent pharmacist at Pharmacy2U, recommends eating and sleeping well along with ‘getting moving again.’
He explains: ‘Many people experience a loss of appetite when they have Covid and so they may have difficulty eating normal food portions, resulting in reduced food intake.
‘It is important that when you do eat, you choose foods that are high in protein and are energy rich to help support the maintenance of your immune system and increase energy levels’
He adds: ‘You can practice some techniques to try and help improve your sleep, including getting up at the same time every day, avoiding taking naps during the day and not going to bed feeling hungry or thirsty.
‘Improving the quality and length of time you sleep can help with your recovery by increasing your energy levels, helping you to do your day-to-day activities,’ he says, adding: ‘It is important to engage in regular activity as this will help you to become stronger and fitter, which will help as you try and attain a similar level of fitness you had before catching Covid.
‘When becoming active again, it is key to start slowly and build your level of activity over time.
‘Do a little, but often and allow for rest between activities. For example, aim for a 30-minute walk by starting with a 5-minute walk without stopping (or less if you feel breathless and tired). Then increase this in staggered intervals each time.’
Catherine cites advocacy and support group Long Covid Kids as something that helps stop her from feeling alone.
She adds: ‘You can ask questions and people will answer with their experiences which might help. Different parts of the UK and different countries do things differently so someone else’s consultants advice or medication might be of help to you.
‘They’re also fighting to try and get our stories out there and heard to try and get the government to take long Covid in children more seriously and do research into it.’
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