From chronic fatigue to brain fog, the long-term effects of Coronavirus continue to plague people across the globe. But scientists and immunological experts are no closer to reaching a consensus regarding the causes of long COVID.

Frustrated sufferers of long COVID still feel that there is a lack of awareness and understanding around their unpleasant, and often debilitating, post-viral symptoms, which have even prevented some from returning to their normal pre-COVID lives, such as working and socialising. 

There is no treatment or cure for these symptoms as of yet.

What is long COVID and who does it affect?

Those who are still unwell or become unwell four weeks after catching Coronavirus are said to have Long COVID or ‘post-COVID-19 syndrome’. It is thought that over two million people in England alone may have suffered long-term effects of COVID.

According to the ZOE Covid Symptom study, 10% of those infected still felt unwell three weeks after their positive test, and 5% were ill for several months after. 

It remains a mystery why some people fully recover from the initial infection, whereas others complain of ongoing debilitating symptoms for more than 12 weeks after contracting COVID-19. According to the NHS, the chances of being affected by long COVID seems to bear no relation to how ill someone is when they first catch the virus. So, even people who initially had very mild symptoms can suffer with long-lasting symptoms when they are no longer infectious.

A new study has shown that 40-60 year old women are most likely to have long covid symptoms, but people of any age and gender can be affected.

There are no known preventative measures that can reduce chances of being left with long-term effects of Coronavirus.

Long COVID symptoms

As stated by the Office for National Statistics (ONS), the most common symptoms of long COVID include chronic fatigue, loss of smell (anosmia), shortness of breath, and brain fog. 

But other people have also reported experiencing other symptoms such as insomnia, rashes, chest tightness, heart palpitations, stomach problems, joint pain, dizziness, and hearing problems, just to name a few. 

A new study led by Michele Spinicci, Infectious disease specialist at the University of Florence and Careggi University Hospital, has shown that different COVID variants can cause different long-term effects. When the original variant was dominant, fatigue, insomnia, taste disorders, and impaired hearing were most common, but the Alpha variant (prevalent in January to April 2021) was shown to be more likely to cause muscle aches, shortness of breath, brain fog, and anxiety and depression.

Parosmia, an incurable disorder that distorts sense of smell, is also common among long COVID sufferers. Many people with COVID-induced parosmia have claimed that scents and foods they previously enjoyed now have a foul smell, like rotting flesh, sewage, chemicals, metal, and garbage. In most cases, parosmia causes loss of appetite and extreme weight loss, as those affected no longer derive any pleasure from eating. 

 Sally McCreith, 31, has COVID-induced parosmia and can always smell “rotten meat with an underlying chemical smell to it.” 

"As a result my taste is affected. I used to be a real foodie, but now eating is so difficult, as everything has this vile smell to it."

 Charities AbScent and Fifth Sense are currently working to raise awareness and fund research into smell and taste disorders.

 ‘Brain fog’ is so intense for some people that it causes extreme memory loss. Sian Griffiths, 43, caught the virus in May 2020 and is yet to return to work. She claims that she “forgets everything” and “can’t lead a normal life.” 

Some people have also reported struggling to walk or talk without suffering from shortness of breath and chest pains. 

Jasmine Hayer, a 32 year old trainee yoga teacher, contracted COVID last March and now struggles with a tight chest, heart pain, breathlessness, fatigue and palpitations. She told the BBC that she has to choose between talking and walking. 

She said: "My whole life has been pulled out from underneath me like so many others with long Covid. We've had a big identity crisis.

 "I need to reinvent myself. I can't even lift my left arm up, let alone be a yoga teacher, which is heartbreaking."

 Although long COVID is thought to be a direct cause of anxiety and depression, it seems inevitable that severe long-term symptoms that prevent people from returning to normal life would have an impact on their psychological well-being. 

The mystery of long COVID

On the Guardian’s Science Weekly podcast, Akiko Iwasaki, professor of immunology at the Yale School of Medicine, claimed that persistent virus infection or remnants of the virus in tissues could be triggering chronic inflammation, and therefore long COVID. However, she also stated that there are other hypotheses about the causes of long-term symptoms of the virus, such as autoimmune disease, but there is not yet a consensus among researchers.

She also said: “Until we understand the deep immunological or molecular mechanisms of disease, and until we understand who’s suffering from what kind of long COVID, I’m not sure if there’s a one drug that can cure all long COVID patients.”

The professor of immunology did, however, state that getting vaccinated is the most effective way to minimise the risk of experiencing long-term effects and reduce existing symptoms. 

According to the BBC, it’s most likely the case that different things happen in different people’s bodies and cause a range of health problems. For example, loss of taste and smell may be triggered by COVID entering and destroying cells, whereas heart problems may be caused by damaged blood vessels.

There is also currently no test to detect long COVID, so there is no definitive way of knowing whether you have it.

‘Left in the dark’

Many sufferers feel they have been left in the dark - no answers, no treatments, and no longer able to lead a normal life again. Some have reported being told by their GPs that there is nothing they can do to alleviate their symptoms, so they essentially just have to ‘ride it out’ and live with their condition. 

Those suffering with long Covid feel neglected by the UK Government due to their recent laissez-faire approach to dealing with the virus. As we re-enter normality under the government’s guidance, people are becoming less cautious about contracting and transmitting the virus. Now masks are no longer mandatory, people feel less inclined to wear masks in public. And from 1st April, lateral flow tests will not be free of charge for the general public in England, so people are also unlikely to test themselves regularly.

The government’s approach also raises questions about the potential future impact of COVID-19 on children. Although the virus is spreading rapidly in schools, parents have only been advised to ‘use their common sense’ and keep their children at home if they test positive. It is estimated that there are currently around 200,000 covid-related absences in schools.

In an interview with the Guardian, Danny Altmann, professor of immunology at Imperial College London, argued that the UK Government’s current strategy fails to take into account the long-term impact of contracting COVID. He also said that more needs to be done to speed up the process of diagnosis, and further research into developing treatment is crucial. 

Long COVID victims are now starting to take action. On 9th March, protesters marched in Parliament Square, London and demanded more research into long COVID. One demonstrator held a placard that read ‘Need to rest, forced to protest #RESEARCHLONGCOVID.’

A group of long COVID victims - LongCovidSOS - are currently campaigning to raise awareness of the symptoms and prevent others with the condition from facing discrimination in the workplace and from the general public. They are also lobbying the government to recognise the medical and economic needs of long COVID sufferers and putting pressure on decision makers to fund more research into the condition. 

If you think you’re suffering from long COVID, please visit the NHS website for medical advice or book an appointment with your GP.

If you want to see more research into long COVID or a change to government policy, start a campaign or petition on Find Others for free today. For more help on getting started, take a look at our guidance article. Unite, campaign, take action.