Professor Tom Evans is an infectious disease specialist working with Glasgow University and a member of the development group responsible for the Long COVID guideline. Tom reflects on the year that’s been and the importance of sharing knowledge in diagnosing and treating Long COVID.
We have been living with COVID-19 for over a year, and it has affected everyone world-wide in at least one way or another. For some of us, this means the loss of a loved one. Now there is finally real hope for a reduction in deaths and severe disease caused by the infection with the introduction of effective vaccines and better treatment.
However, for some who experience even relatively mild COVID-19, their recovery can be very prolonged and they continue to experience a wide variety of symptoms – including a new condition of post-COVID-19 syndrome, also known as Long COVID.
My own experiences of managing patients with post-COVID-19 syndrome reflects very much the published studies of this condition. They all have experienced a range of persistent symptoms – fatigue is almost universal, as well as intermittent fast heart rates and an inability to focus, often referred to as ‘brain fog’. Many of these patients are still unable to work many months after their initial acute illness. They are frustrated by poor appreciation by some medical staff of the nature of the ongoing symptoms after acute COVID-19, of having multiple referrals to emergency departments or individual specialists, and in a lack of effective therapy.
When do you know you have Long COVID?
But what exactly is Long COVID?
Long COVID is when a patient continues to experience or develops new disabling symptoms for months after the initial infection. These can involve just about any organ system of the human body. Extreme fatigue is commonly reported in addition to:
- an intermittent racing pulse
- loss of concentration (brain fog)
- fevers, and
- abdominal pain.
Many patients also report that these symptoms can come and go. Such a diverse range of symptoms for Long COVID presents a real challenge to general practitioners: is this continuing infection? what investigations are required? who is the best specialist to whom I should refer?
Post-COVID-19 syndrome – what’s in a name?
Because of the growing realisation that these persistent symptoms were proving quite common, it was clear there was a need for a national guideline to set out a definition of the condition, to identify the evidence base for any investigations and treatment, and to develop a framework for services that might be required.
A unique collaboration was formed between Healthcare Improvement Scotland, the National Institute for Health and care Excellence (NICE) and the Royal College of General Practitioners, to develop a guideline that could be used across the UK. As an infectious disease specialist, I was asked to be a member of the oversight committee, to provide a definition of the condition, and to set out the questions that the guideline needed to address. This was a real challenge – the knowledge base for Long COVID was very limited and there was no accepted definition or indeed name for the syndrome. Given the large range of symptoms reported and that we wished to make clear this was quite distinct from the symptoms from the acute phase of the infection, we settled on ‘Post-COVID-19 Syndrome’, with a definite diagnosis at 12 weeks after the initial infection.
Patient groups and the media have continued to use Long COVID – I don’t feel there is any problem with this. We are used to there being ‘medical’ names for conditions as well as more common terms used by the public – doctors will call glandular fever ‘infectious mononucleosis’, but the important point is that we are talking about the same thing. Having a definition is incredibly important – this will allow every consultation with patients who have Post-COVID-19 syndrome to be captured by computerised data systems so that we can build up an accurate picture of its prevalence, the spectrum of symptoms experienced and risk factors for its development.
The guideline development team worked incredibly hard and at a fast pace to gather all available evidence in order to produce a document that could be used as quickly as possible. Specialists from across the UK were involved, as well as patients who had experienced the condition. A real challenge for developing the Long COVID guideline was the dearth of good evidence – this is such a recent illness that there was not much high quality research available. However, the final guideline incorporated all that was known at this time and sets out some concrete advice on diagnosis, investigations and management.
A “Living” Guideline
The developers very much realised that the guideline will continue to be modified over time as more evidence accrues – what we refer to as a ‘living’ guideline. But it is a welcome beginning that provides a solid start in recognising and defining the condition, and providing valuable evidence-based recommendations for clinicians caring for Long COVID patients.
As we continue to look at the new evidence in order to help guide future versions of the guideline, it’s important that healthcare professionals and those affected by Long COVID are familiar with what we currently know about the guideline and the best way to diagnose and treat it. Knowledge and the sharing of that knowledge will be crucial to improving the lives of those with the condition.
Professor Tom Evans is an infectious disease specialist working with Glasgow University and a member of the development group responsible for the Long COVID guideline.
Visit the SIGN website to read our Long COVID guideline.