What is Long COVID?

Since that start of the COVID pandemic in 2020, 23.6M people in the UK have tested positive for the decease, and very sadly, 189,000 people have died as a result of having the decease. Worldwide there have been 609M COVID cases and sadly, 6.51M deaths. Thankfully, in the UK, 22,954,691 people have recovered from COVID, however, it is emerging that some 2 million people in private households in the UK (3.1% of the population) were experiencing self-reported Long COVID as of 31 July 2022, according to estimates from the Office for National Statistics (ONS).

The latest information from the ONS states that, of double-vaccinated adults, 4.0% self-reported Long COVID 12 to 16 weeks after a first infection compatible with the Omicron BA.1 variant, compared with 9.2% for those compatible with the Delta variant.

The odds of reporting Long COVID were 48.2% lower for first COVID-19 infections compatible with the Omicron BA.1 variant than those compatible with the Delta variant among adults who were double vaccinated when infected; this was after statistically adjusting for socio-demographic characteristics.

Of triple-vaccinated adults, 4.5%, 4.2% and 5.0% self-reported having Long COVID 12 to 16 weeks after a first laboratory-confirmed coronavirus (COVID-19) infection compatible with the Omicron BA.1, Omicron BA.2 or Delta variants, respectively, using data to 27 May 2022.

What is long COVID?

At present, because it is such a recent phenomenon, Long COVID isn’t fully understood, and no internationally-agreed definition has been established, so estimates of how common it is, or what the main symptoms are, vary.

In the UK, Long COVID is described in the National Institute for Health and Care Excellence (NICE) clinical guidelines as “signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post COVID-19 syndrome (12 weeks or more).” NICE also term the condition of Long COVID as post-COVID-19 Syndrome.

What are the Signs and Symptoms of Long COVID?

Most people who catch COVID now, don’t become severely ill and get better relatively quickly, however, some people have long-term problems after recovering from the original infection, even if they weren’t very ill in the first place. Guidance for UK health professionals refers to symptoms that continue for more than 12 weeks which cannot be explained by another cause.

According to NICE, symptoms after acute COVID-19 are highly variable and wide ranging. The most commonly reported symptoms include, but are not limited to the following:

Respiratory symptoms

• Breathlessness.
• Cough.

Cardiovascular symptoms

• Chest tightness.
• Chest pain.
• Palpitations.

Generalised symptoms

• Fatigue.
• Fever.
• Pain.

Neurological symptoms

• Cognitive impairment (‘brain fog’, loss of concentration or memory issues).
• Headache.
• Sleep disturbance.
• Peripheral neuropathy symptoms (pins and needles and numbness).
• Dizziness.
• Delirium (in older populations).
• Mobility impairment.
• Visual disturbance.

Gastrointestinal symptoms

• Abdominal pain.
• Nausea and vomiting.
• Diarrhoea.
• Weight loss and reduced appetite.

Musculoskeletal symptoms

• Joint pain.
• Muscle pain.

Ear, nose and throat symptoms

• Tinnitus.
• Earache.
• Sore throat.
• Dizziness.
• Loss of taste and / or smell.
• Nasal congestion.

Dermatological symptoms

• Skin rashes.
• Hair loss.

Psychological/psychiatric symptoms

• Symptoms of depression.
• Symptoms of anxiety.
• Symptoms of post-traumatic stress disorder (PTSD).

The following symptoms and signs are less commonly reported in children and young people than in adults:

• Shortness of breath.
• Persistent cough.
• Pain on breathing.
• Palpitations.
• Variations in heart rate.
• Chest pain.

According to the ONS, the most common long COVID symptoms were fatigue, 62% of those with self-reported long COVID, shortness of breath 37%, difficulty concentrating 33% and muscle ache 31%. Symptoms adversely affected the day-to-day activities of 1.5 million people, or 73% of those with self-reported long COVID.  Self-reported Long COVID was more common in:

• Those aged 35 to 69 years.
• Females.
• People living in more deprived areas.
• Those working in social care.
• Those aged 16 years and over who were not working and not looking for work.
• Those with another activity-limiting health condition or disability .

The ONS estimates that between 3 and 12 per cent of people who catch COVD will still have symptoms 12 weeks after their initial infection.

Researchers are exploring whether Long COVID is new and unique to COVID as some symptoms are similar to those caused by chronic fatigue syndrome (ME) and other chronic illnesses that develop after infections. Chronic fatigue syndrome involves extreme fatigue that worsens with physical or mental activity, but doesn’t improve with rest.

How does long COVID affect the body?

There is a lot of research investigating the potential long-term impact of coronavirus, including that of Long COVID and it has been noted that it can be hard to tell if someone is having symptoms due to COVID or another cause, such as a pre-existing medical condition.

COVID can attack the body in a range of ways, causing damage to the lungs, heart, nervous system, kidneys, liver and other organs. Mental health problems can arise from grief and loss, unresolved pain or fatigue, or from post-traumatic stress disorder (PTSD) after treatment in the intensive care unit (ICU).

It isn’t clear how long the effects of Long COVID might last. The effects also could lead to the development of new conditions, such as diabetes or a heart or nervous system condition. The relationship between COVID-19 and diabetes, especially type 2 diabetes, is complex. Type 2 diabetes is a risk factor for serious cases of COVID-19, and some survivors of the illness seem to be developing type 2 diabetes signs after they recover from COVID-19.

The effect that some of the main reported symptoms of Long COVID might have on a person’s body include:

Fatigue

This is a feeling of being tired all the time that can stop a person from doing everyday tasks and activities. People report this feeling as being more tired than staying up too late or feeling exhausted after a gruelling workout. Many reporting that it is a feeling that they haven’t felt before, saying that it is a different experience, a different feeling.

Shortness of breath

Known as dyspnoea, it is a tight feeling in the chest. It can be difficult to take deep breaths. While most people try to “catch their breath” after exercising or running, someone with Long COVID, may get winded or breathless just by walking around or going up a flight of stairs.

Brain fog

Long COVID has associations with serious neurological and neurocognitive impairments, a phenomenon sometimes known as neuro-COVID. Cognitive dysfunction is one of the top three most debilitating symptoms of Long COVID. Brain fog is the most common symptom described by people with cognitive dysfunction following COVID-19 illness. We use our brains every day to get things done, especially with things such as solving problems, making decisions, planning, and completing tasks we have started.

These functions might be affected after having COVID, and developing Long COVID and you might find it difficult to get started on or finish tasks, or you may get distracted and forget what you were meant to be doing. Your memory might be affected, and you might find it difficult to keep information in your head, make choices or remember things such as taking your medication. Your attention and focus might be affected, and you might get distracted easily, lose things, find it difficult to hold or follow a conversation or to do two things at the same time.

Muscle pain

Severe viral infections, including COVID-19, can cause muscle pain or soreness, which can be in a specific area or spread more widely. The affected area feels sore to the touch and is made worse by specific movements such as turning the chest or stretching. Whilst joint and muscle problems can occur anywhere in the body during or after COVID-19, back problems are among the most common. Joint stiffness and muscle weakness are also likely to get worse if a person was not moving around as much when they were unwell.

Palpitations

Some people are experiencing heart palpitations or changes to their heart rate as a symptom of Long COVID. According to an analysis of several studies involving 48,000 people with Long COVID, more than one in 10 of them, 11 per cent experienced heart palpitations. This can feel like your heart is racing, pounding or fluttering, and you may feel this in your chest, neck or throat.

In some people with Long COVID, heart palpitations may be caused by a problem with their autonomic nervous system, which controls things such as heart rate, breathing and blood pressure. This condition is called postural orthostatic tachycardia syndrome (PoTS). It is not known for sure how common this is among Long COVID sufferers, but it may be a significant proportion of those who get palpitations or dizziness when they stand up.

What causes Long COVID?

Whilst several theories have been put forward to explain Long COVID, a new study has found that leftover residues of the virus might be driving this condition. The research study published in Clinical Infectious Diseases journal has found that the spike protein of the virus remains in the blood of long COVID people up to a year after the infection. The researchers have come to a conclusion that these leftover residues of the virus could be hampering the immune system causing complications like blood clots and inflammation, which subsequently leads to several complications causing long COVID.

Organ damage caused through contracting COVID-19 could play a role in causing Long COVID. However, it is notable that Long COVID is not just afflicting people who were very sick with the coronavirus: Some patients who were never severely ill with COVID-19 are experiencing long-term symptoms. Some people may need continuing care and even readmission to hospital.

Immunologist Chansavath Phetsouphanh of the University of New South Wales, Sydney, is chasing a third lead, motivated by what the blood of Long COVID patients has divulged, an immune system gone haywire even 8 months after they had first tested positive.

How long does it take to recover from long COVID?

Long-COVID continues to cause a detrimental impact on the quality of life of many people. A new study published in Annals of Clinical and Translational Neurology found that the continued symptom burden of Long-COVID persisted for a median of 14.8 months after the onset of symptoms.

What should you do if you have long COVID?

If you have Long COVID, or if you are worried that you might have it, in the first instance contact your GP who will ask you about your symptoms and may do some tests to find out what is causing them. If you are experiencing mental health symptoms, such as anxiety or depression, you may be referred to talking therapies such as CBT. If you attend an outpatient COVID clinic, talk to healthcare professionals at the hospital about Long COVID problems

If you were treated for COVID-19 in hospital, you may have been discharged with oxygen, to use at home. With Long COVID you might continue to need oxygen all day, with a few short breaks, or you might just need it for activities such as washing, dressing and other daily activities. If you have any worries, speak to your GP or other health care professional.

Asthma and Lung UK have developed an online Long COVID needs assessment tool that will help you to understand your current Long COVID symptoms, your needs, what to do next and what help you can get. They also provide a helpline who you can talk to about your symptoms and where to go for advice and support.

It is important to make sure you get enough sleep to help you focus and remember things. You could also ask people around you such as family or friends if they have noticed changes or problems with your memory and thinking. You may need people around you to support you to manage your daily activities.

If you have long COVID and are unable to work, if you are employed, you may be eligible for Statutory Sick Pay (SSP). If you are not eligible or your SSP ends, you may be able to apply for Universal Credit or Employment and Support Allowance (ESA) if long COVID affects how much you can work.

Employers and employees can get advice from the Society of Occupational Medicine or ACAS on managing health conditions at work, returning to work after COVID-19 and sickness and absence because of long COVID. You may need to ask your employer to make reasonable adjustments so you can continue to work while you recover.

Schools, academies and colleges must make arrangements to support pupils with medical conditions including Long COVID. You or a healthcare professional should tell the school if your child has Long COVID medical needs.

Can long COVID be prevented?

Getting vaccinated for COVID-19 lowers the risks of COVID infection. While breakthrough infections are possible, being fully vaccinated and boosted is effective in reducing the risk of hospitalisation and death due to COVID. Research is ongoing about how Long COVID affects people who had breakthrough COVID, but it is likely that being vaccinated reduces the risk. Unfortunately, researchers still don’t know why some people and not others develop Long COVID, so there isn’t any reliable advice about how to reduce the risk of Long COVID once someone has already caught COVID-19.

However, reducing the risk of exposure to COVID, and of developing the illness is obviously the best preventative measure of developing Long COVID.

How is long COVID diagnosed?

Currently there is no standard test for Long COVID. An expert panel of clinicians including NICE, the Scottish Intercollegiate Guidelines Network (SIGN), and the Royal College of General Practitioners (RCGP) has jointly produced 13 recommendations to guide the diagnosis of long COVID-related conditions, these include:

• Symptoms of possible non-COVID-19-related issues should be investigated and referred as per local guidelines. Long COVID alone is not a sufficient diagnosis unless other causes have been excluded.
• Carry out a face-to-face assessment, including a thorough history and examination; consider other non-COVID-19-related diagnoses; and measure full blood count, renal function, C-reactive protein, liver function test, thyroid function, haemoglobin A1c, vitamin D, magnesium, B12, folate, ferritin, and bone.
• In those with respiratory symptoms, consider chest X-ray at an early stage. Be aware that a normal appearance does not exclude respiratory pathology.
• Be aware that simple spirometry may be normal, but patients may have diffusion defects indicative of scarring, chronic pulmonary embolisms, or microthrombi. Consider referral for full lung function testing.
• Measure oxygen saturation at rest and after an age-appropriate, brief exercise test in people with breathlessness, and refer for investigation if there is hypoxaemia or if there is any desaturation on exercise.
• Consider the possibility of a cardiac cause of breathlessness.
• Be aware that a normal D-dimer level may not exclude thromboembolism, especially in a chronic setting. Referral for investigation is indicated if there is a clinical suspicion of pulmonary emboli. Thromboembolism may occur at any stage during the disease course.
• In patients with inappropriate tachycardia and/or chest pain, carry out an electrocardiogram (ECG), troponin test, Holter monitoring, and echocardiography. Be aware that myocarditis and pericarditis cannot be excluded on echocardiography alone.
• In patients with chest pain, cardiac magnetic resonance imaging may be indicated in a normal echo to rule out myopericarditis and microvascular angina.
• In patients with palpitations and/or tachycardia, consider autonomic dysfunction.
• In patients with urticaria, conjunctivitis, wheeze, inappropriate tachycardia, palpitations, shortness of breath, heartburn, abdominal cramps or bloating, diarrhoea, sleep disturbance, or neurocognitive fatigue, consider mast cell disorder.
• Consider a neurocognitive assessment in patients with cognitive difficulties sufficient to interfere with work or social functioning.
• In patients with joint swelling and arthralgia, consider a diagnosis of reactive arthritis or new connective tissue disease and investigate and refer as appropriate.

How is long COVID treated?

Because the symptoms of Long COVID can fluctuate and vary, people may require individualised rehabilitation plans, not a one-size-fits-all approach. These plans could involve making major or long-term lifestyle changes. The British Medical Journal (BMJ) emphasise that doctors should listen to their patients, document their symptoms, understand how they change, be alert to new symptoms, and provide appropriate care.

Home remedies for managing Long COVID may include the following:

• Taking over-the-counter pain relievers, such as paracetamol, to relieve painful symptoms or fever – don’t stop doing things that make you feel breathless. If you stop using your muscles, they will get weaker, which can make you more breathless when you try to use them.
• Resting and relaxing – frequent short rests are better than a few longer ones, so rest before you become exhausted.
• Setting achievable targets to reach – consider the best time of the day to do certain activities based on your energy levels.
• Following a healthy diet – a Mediterranean diet including olive oil, fruits and vegetables, nuts and beans, and whole grains has been proven to improve thinking, memory, and brain health.
• Getting quality sleep.
• Limiting alcohol intake, stick to the recommended alcohol limits.
• Limiting caffeine intake.
• Not smoking.
• Be kind to yourself during your recovery – be prepared that some days will be worse than others.
• Having a daily routine can be good for your mood and sense of stability.
• Connecting with other people can help you feel happier – make sure to keep in touch with family and friends.
• Flexibility exercises such as stretches, yoga, tai chi and strength exercises such as climbing stairs, lifting weights and working with resistance bands can be useful, although check with your doctor before starting a new exercise regime.

However, if you experience any of the following you should seek medical help by calling 911 and informing them that you have symptoms that may relate to Long COVID:

• Breathlessness that worsens.
• Unexplained chest pain.
• A new state of confusion.
• Weakness.
• Changes in vision, hearing, or speech.

Final thoughts

It is early days in the research into Long COVID, however, great strides have been made into recognising the condition and finding treatments. Long COVID symptoms seem to be caused by the body’s response to the virus continuing beyond the initial illness and thankfully it is not contagious.