In the last weeks and months, we have seen real evidence that COVID-19 is around for good and that it is not just as the brief flu-like illness that we initially thought it was.
Though it is true that most people only experience COVID-19 short term, it has become increasingly apparent that an unlucky few are experiencing the effects of Covid months after their initial diagnosis.1
The focus thus far has been on curbing the number of lives taken by this virus but now new problems need to be solved: why some people are suffering from long Covid, how they can be helped and if sufferers will ever recover.
What is long Covid?
To date, there is no definitive list of symptoms that constitute long Covid, with every patients experience being slightly different. That being said, one symptom overarches patient accounts – severe exhaustion and fatigue.2
Other symptoms recorded include: breathlessness, repetitive cough, joint and muscle pain, sensory issues such as hearing problems and lack of smell as well as more serious complications involving internal organs.3
But it is not just a physiological toll this long term condition is causing, with many patients expressing struggles with their mental health too – from depression and anxiety to others remarking that they are unable to think as clearly as they once could.4
Who does long Covid affect?
At the moment we don’t really know. One thing for certain is that long Covid is not just experienced by those who had a severe episode, and can equally cause long term damaging effects in people that only had mild symptoms.1
As our understanding of the virus develops and we move into a new stage of the pandemic, more work has been done on understanding exactly who is at risk of long Covid. One investigation by Tim Spector from the COVID symptom study indicates that they have identified six groups of symptoms of the virus, several of which they believe are associated with longer term symptoms. Spector suggests that if individuals are experiencing “a persistent cough, hoarse voice, headache, diarrhoea, skipping meals, and shortness of breath in the first week”, they are two to three times more likely to get longer term symptoms. Patterns in the cohorts data also implied that long Covid was about twice as common in women as in men and that the average age of someone presenting with it is about four years older than people who had “short Covid”.5
However, Spector also remarked that there are likely different symptom clusters across different age ranges, therefore what can be expected in a young person may differ from what is seen in elders. The hope is that as more data becomes available, patterns will become more defined, allowing scientists to develop early interventions for those at risk.5
How many people are suffering from long Covid?
It is hard to tell… one Italian study focusing exclusively on people who needed hospital treatment, concluded that 87% of people had at least one symptom of COVID-19 two months later and that over 50% of people were still struggling with fatigue after this timeframe.
Another wider study using the Covid Symptom Tracker App, initially found that 12% of people had symptoms after one month. However, it’s latest unpublished data alludes to a brighter picture, indicating that just 2% of all people infected have long Covid symptoms post 90 days.6
How can we help with long Covid?
Covid is not going anywhere and long Covid is something we will have to learn to manage. Over time it will likely be treated as any other long term disease, with its own treatment pathway established.
We are interested in understanding patient behaviour and feelings at the different stages in the Covid journey. We believe that our unique data blend can help give intelligence on patients at risk, bolster educational messaging and help optimise medicine usage at a time in which taking medicines as prescribed is of the utmost importance.
We know how to engage and listen to patients and we know that people are speaking online about their medicines, diagnosis and management of their conditions. We think this highly valuable information should be structured and used to help the Covid effort.
We are particularly interested in reviewing evidence related to:
Symptoms – with so much variation in the symptoms experienced as a result of long Covid, we are interested in exploring if there are any correlations between symptoms or if certain symptoms in general are more likely to result in long Covid.
Personas – Tim Spector’s research suggests that there are significant differences in how many people get long Covid according to ethnicity, age and gender. We are interested in exploring this more.
Knock on effects for patients – we want to find out exactly what is contributing to a significant decline in mental health, so that we understand how patients can be supported throughout their whole Covid journey.
If you are interested in seeing what we have done so far to help out during the pandemic, please check out the following blogs COVID-19 Survey and How we have been lending a hand.