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What is Long COVID?

Long COVID dominoes

Long COVID is sometimes known as Post COVID-19 Syndrome. The symptoms of Long COVID can start either during or after a COVID-19 infection. Long COVID is diagnosed if the symptoms continue for more than 12 weeks, and cannot explained by a different diagnosis. There are usually a number of symptoms, which can change over time and can affect multiple systems in the body. The symptoms can come and go, vary in intensity and can have a major impact on quality of life. It is estimated that 1.9 million people in the UK are living with long COVID.

The most common symptoms of long COVID are PEM/PESE, extreme fatigue, feeling short of breath, loss of smell and muscle aches. However, there can be lots of other symptoms too, including brain fog, chest pain or tightness, difficulty sleeping, heart palpitations and more.

The symptoms and management of long COVID, ME/CFS and Post Viral Fatigue are very similar, and as such much of the general advice for each condition can be equally applicable to the other.

The following slides with voiceovers will help you understand dysregulation and how this contributes to the multiple symptoms in primary fatiguing conditions. 

The whole slide show is approximately 30 minutes long, but we have split it up into 3 parts to help concentration levels and retention of information. Please watch in order, one to three. 

Watch as many times as you need and also show to your family so they have a better understanding of your symptoms. 

Do not worry if you don’t completely understand everything as there is quite a bit of medical language but we are hoping it will help explain and validate your symptoms to yourself and others. 

We would like to acknowledge BACME, the British Association of Clinicians in ME/CFS and their original contributors for the background information on current theories, we have based these slides on. 

Slides and script have been developed by Sally Collins, Physiotherapist. 

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