Updated 30th May 2022

Living with Long COVID summary

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    In our latest expert webinar, Professor Tim Spector, lead scientist at the ZOE COVID Study, was joined by his colleagues from King's College London, Dr Claire Steves, Reader in ageing research, and Professor Alexander Hammers, who works in imaging and neuroscience and suffers from Long COVID.

    They shared personal Long COVID experiences and answered your questions, including who’s getting Long COVID, what it's like to live with it, and what help is available.

    What is Long COVID?

    The definition of Long COVID has varied throughout the pandemic. The World Health Organisation (WHO) has just produced a new definition of Long COVID, which they call ‘post COVID-19 condition’. They describe it as a syndrome that occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually three months from the onset of COVID-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis. 

    The successful UK vaccination program means that although COVID rates are still relatively high, hospitalisations and deaths remain low. However, with tens of thousands of people still testing positive every day, this means around 900 new cases of Long COVID are developing on a daily basis, so it’s vital that we shift our focus to addressing this serious Long-term health problem. 

    Our experts agree that having a definition for Long COVID is helpful, especially as early in the pandemic, doctors debated the existence of Long COVID and sufferers were not taken seriously. However, the definition is a little unclear about the time frame of Long COVID symptoms. 

    “What they’re saying is that people with this condition have had it for longer than three months from the time they first got infected, but it can come and go,” says Claire.  

    Different studies have produced various estimates of how many people get Long COVID and who is most likely to get it. 

    “The ONS (Office of National Statistics) has produced some numbers which suggest that a very large number of people in the UK are affected by this,” says Claire. “Between three and five percent of people who are affected by COVID go on to have symptoms for longer than 12 weeks that affect their daily life.”

    “The ZOE COVID Symptom Study has played a major role in defining the risk factors for Long COVID, which seem to be higher age, being female, the number of symptoms you have in the first week, and being overweight,” says Alexander. “But risk factors don’t explain everything, and it can be very unpredictable.”

    As a case in point, Alexander highlights that he was very fit and active before catching COVID, and his only risk factor was being middle-aged. 

    What are the symptoms and treatments for Long COVID?

    The WHO definition of Long COVID includes symptoms such as fatigue, shortness of breath, and cognitive dysfunction. However, Long COVID experiences vary hugely from person to person. 

    “Everyone experiences illness in their own way, and that is certainly no different in Long COVID,” says Tim. 

    In the webinar, we heard about Alexander’s experience. Thanks to his high fitness levels, he expected to recover from COVID quickly after testing positive. Instead, he found himself with an unpredictable set of debilitating symptoms that left him unable to work for weeks after the initial infection. A year later, Alexander still has symptoms, including fatigue and tinnitus. 

    We also saw a clip from Harry, a young person who has been suffering from Long COVID symptoms more than a year after he first contracted the virus, and who developed heart symptoms that took him to A&E on three separate occasions. Each time he was told his symptoms were caused by anxiety, but after getting a private MRI scan, Harry was diagnosed with myocarditis (inflammation of the heart). 

    We also saw a video clip from Zoe, another young Long COVID sufferer who also shared her experience of enduring fluctuating neurological symptoms including migraines since contracting COVID in June this year. 

    The variation in these three stories highlight how variable and unpredictable Long COVID is. The wide variety of symptoms also makes treating COVID difficult. 

    Unfortunately, like many people with Long COVID, Harry and Zoe haven't received much help from the NHS. As a result, they have turned to self-medicating with imported medications, alternative therapies, diets, and vitamins. 

    Currently, there is no general treatment for Long COVID, but medications can help with individual symptoms such as headaches or heart problems. So if you’re experiencing Long COVID symptoms, talking to your GP is essential. 

    “Given that Long COVID is very different in different people, you wouldn’t expect the same treatment to work for everybody,” says Alexander. 

    There are also several Long COVID treatment centres and clinics that can assess you and may be able to prescribe treatments or therapies that can help you get back to living your life. Visit the ‘Your COVID Recovery’ website to find out what help is available in your area. 

    Long COVID and vaccination

    There has been a lot of interest in whether vaccination can help prevent Long COVID or reduce its symptoms. 

    While data from the ZOE COVID Study has shown that being double vaccinated halves the risk of developing Long COVID, there’s less evidence about whether it can help people who already have the condition. Several studies have looked at the effects of vaccination on long COVD symptoms, and Claire has written an article about it.

    “At the moment, I’m unable to say whether a vaccine will make a difference if you have got Long COVID. But what I can say is that if you haven’t had COVID so far, and you get a vaccine, your risk of getting Long COVID is dramatically reduced,” says Claire. “One of the best preventative strategies is to make sure that you get double vaccinated.”

    “Perhaps the most important message from this webinar is don’t get it in the first place because if you haven't had COVID, you can’t get Long COVID,” Alexander adds.

    We’re continuing to study the effects of vaccination on Long COVID. To help us understand Long COVID and the impacts of vaccination, we need as many people as possible to download the ZOE COVID Study app and log your vaccines and daily health reports. It only takes a minute, but you’ll be contributing to life-saving research. 

    Stay safe and keep logging.

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