A Review of the Evidence Around Ongoing Covid19 Symptoms – ‘Long Covid’

As a trustee of the QNI, I am privileged to have some insight to the extraordinary work that nurses in the community have been doing to support people with Covid19.

Sadly, what is now becoming clear is that many people will not just need help when they first become sick, but will require longer term support for ongoing and often debilitating symptoms. For some, this is related to their rehabilitation following a hospital admission, but others are reporting life-changing experiences that follow an initial infection that they managed at home, with symptoms becoming more severe over time.

In my day job, I am the Associate Director for Evidence and Dissemination at the Centre for Evidence and Dissemination within the National Institute of Health Research. We have just completed a ‘dynamic’ review of the evidence around ongoing Covid 19 symptoms (often called ‘Long Covid’). The review is a synthesis of the current state of evidence, the insight from people suffering from the longer-term effects of Covid 19 and those caring from them.  The review was led by Dr Elaine Maxwell, our content lead, an academic who originally trained as a nurse.

Covid19 only began to emerge at the end of 2019. So, as yet there is little research into the number of people at risk of developing ongoing Covid19 and their likely symptom journey. However, a number of small-scale studies, alongside the feedback from patients and professionals, are starting to give us some indications. We have synthesised these in our review.

How many people are affected?

Whilst most people with Long Covid slowly get better over time, a minority have ongoing problems and their long-term outlook is unknown. Estimates on the percentage of people who will have ongoing symptoms from Covid19 vary. Data from Public Health England and the UK Covid Symptom study app suggest at least 10 percent of all people that contract the virus will have symptoms for at least a month. Current planning assumptions are that at least 45 percent of people that have been hospitalised with Covid19 will require some sort of ongoing support.

What symptoms do people have?

Whilst the range of symptoms and their relative frequency is not fully documented, it is clear that Covid19 can affect not only the respiratory system but also the heart and cardiovascular system, the brain directly (encephalitis) and indirectly (e.g., secondary to low levels of oxygen or blood clots), the kidneys and the gut. Symptoms often fluctuate and may be experienced in multiple systems at the same time. A common experience is for symptoms to arise in one physiological system then abate, only to arise in a different system.

Psychological and mental health problems are also common. We believe that an important area for research will be the interactions between physical and mental health, recognising mental health issues as both a possible consequence of living with Covid19 and as a potential consequence of experiencing ongoing physical symptoms.

Diagnostic Uncertainty

‘Long Covid’ is a term widely used on social media but is not a well-defined term and not a diagnosis used widely by clinical staff. There is also the possibility that the symptoms people experience may be due to a number of different syndromes (for example Post Intensive Care syndrome, Post Viral Fatigue syndrome and Long Term Covid syndrome). Some people may be suffering with more than one syndrome at the same time. This diagnostic uncertainty means that there is no diagnostic code for ‘Long Covid’ and it is therefore not yet captured in routine clinical datasets.  This is a major barrier to achieving a better understanding and planning for the disease.

What was the impact on patients?

The public perception of Covid19 so far has been in binary terms, as either severe enough to need hospital admission or mild enough to recover quickly and not to require support. The failure to acknowledge a third path, together with the media focus on mortality rates, created anxiety in those with continuing symptoms who were left in an uncertain no man’s land about the severity of their condition.

We heard numerous distressing stories from the patients about how their symptoms were often not recognised as being associated with Covid19 and frequently not taken seriously.  One commented:

“I finally found a GP who took me seriously last Saturday. I was on the point of crying talking to her, just understanding that people’s symptoms are real and diverse.”

The patients we spoke to felt there should be more education for primary healthcare providers to ensure that potential suffers are listened to and understood, all of their symptoms assessed, appropriate tests/investigations arranged and care plans agreed.

I have no doubt that health professionals will be just as anxious for this guidance. Of course, many people working in the NHS will also be experiencing long term symptoms themselves.

NICE have just announced that they plan to develop a rapid guideline on the persistent effects of Covid19 on patients by the end of the year. Our work is ongoing; we will be adding to the website as new evidence emerges and we plan a major update in January/February 2021. We are very keen to receive feedback from patients and those caring from them. You can access our survey via this weblink.

Candace Imison

QNI Trustee