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Long Covid - an update for primary care: Lay Summary


Lay summary of the 'Long covid - an update for primary care' publication 

Long covid is when covid-19 symptoms last longer than one month. This affects at least 1.99 million people in the UK (around one person in 30). A million have been unwell for over a year. Over 400,000 are not better after two years. Symptoms of long covid are quite varied. They include feeling very tired all the time, struggling to think clearly (sometimes this is also known as 'brain fog'), finding it hard to breathe, dizziness, joint pains, ringing in the ears, bloating, irregular periods, low mood, and more. As you might imagine, holding down a job and taking part in daily activities can be difficult. On bad days normal life can be impossible.

Support groups for people with long covid include Long Covid Support or Long Covid SOS. These groups have helped build ‘patient-made’ knowledge. Patients have said their doctors can be dismissive or “gaslighting”. Doctors have learned a lot about long covid over the last couple of years but it is still a new illness. There is much more to learn and talking about long covid can be hard.

In this article we wrote about long covid. We wrote this for GPs but people with long covid might also find it useful. Here are six key points.

1. Long covid isn’t “all in the mind”

No specific blood test or X-ray will say for sure that someone has long covid. We also don’t know why some people get it and others don’t. This doesn’t mean long covid is not a real condition. Researchers think the covid-19 virus causes changes in the body. Long covid is when these changes continue to affect people for several weeks. The official name is ‘post-acute covid-19’ for symptoms between 4 and 12 weeks. When symptoms last longer than 12 weeks it is ‘post-covid-19 syndrome’.

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2. Most people will get better—but they need support

Most people with symptoms at four weeks will get better within another three months. Early diagnosis and support helps prevent problems in the future. If you think you have long covid, go to your GP and ask for help. You can show them a copy of this infographic. They can help by putting the diagnosis on your record and listening to you. They can also check for other health problems you might have. We don't know enough about long covid yet to offer specific treatments or medicines. You might appreciate their honesty if they say “we don’t know”. It might be possible to refer you to a long covid clinic if there is one in your area. Long covid clinics can offer more specialist support. The clinic team might include doctors, nurses, physiotherapists, occupational therapists, and psychologists.

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3. Pacing and understanding triggers are key to management

Long covid symptoms can flare up or go away for short periods of time. It is common for symptoms to be worse after exercise. This is ‘post-exertional symptom exacerbation’ (PESE). If anyone tells you to get a grip and push through and you don't want to do this, ignore them. It is better to listen to your body and understand your triggers. Try to save energy. Saving energy is especially important on ‘amber’ or ‘red’ days when you start the day feeling ill. Plan your more difficult tasks for ‘green’ days when you wake up feeling better. This will help avoid ‘boom-and-bust’ cycles that can stop you getting better. You will need to explain this to family, friends and work colleagues. If they understand how you are feeling, they can work around your changing ability to join in.

Icon of traffic lights, representing the red, amber, and green of pacing

4. Fast heart rate is common—but it’s probably not “anxiety”

The most misunderstood complication of long covid might be orthostatic tachycardia. This is also called 'PoTS'. This is a fast heart rate, especially when standing up. It is often caused by an upset of the autonomic nervous system. The autonomic nervous system controls blood pressure and heart rate. High heart rates also happen when people are under stress or worried. This means that people with orthostatic tachycardia can receive a diagnosis of anxiety. If you think you might have PoTS, you might find it helpful to see a doctor who is familiar with long covid.

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5. ‘Red flag’ symptoms are uncommon but need prompt action

Some research studies show a higher risk of cardiovascular problems after covid-19. Most people with long covid are not going to have a stroke or a heart attack. But some symptoms need urgent attention. Signs to look for include sudden drooping of one side of the face, or being unable to move limb(s) or speak clearly, or new chest pain.

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6. Research studies are recruiting

There is a lot of research into long covid. Right now, there is no magic bullet treatment, but there are studies running in the UK. These studies are looking at causes of long covid and also treatments that might help. You might wish to volunteer. A list of ongoing studies in UK is here.

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