Long COVID: the long and winding road

Long COVID: the long and winding road

Katrina Delargy of Tiyga Health talks about combining knowledge and taking a multidisciplinary approach to managing COVID-19.

2020 has been vastly different to that which could have ever been predicted or planned for. Nobody expected that our daily lives would be so dependent on the predictions of epidemiologists or the plethora of political rules. Our best weapon against the spread of COVID-19 is responsible individual and personal behaviour. Our daily choices can and do affect the lives of many families and communities.

“What gets measured gets managed” is often attributed to Peter Drucker, the management theorist, implying that we cannot manage something if we cannot measure it. We do not know how many people have had a mild form of COVID-19 but not been tested. 10% of those who tested positive have experienced “long COVID”; 60% of those with “long COVID” suffer a wide range of symptoms for three months or more afterwards. This debilitating syndrome can stop them from working and leading a normal life.

COVID-19 is a new disease, and we are still learning what needs to be measured to make the right decisions for our economy and the health of our citizens.

Hindsight is a great thing; scientists are revising their models every day and learning from the pattern of new cases in response to the various measures introduced in different countries. We have learned a lot, but there is considerably more learning still to be done – much of it in near real time.

In January 2020 the BBC reported: “The chief medical officer has revised the risk to the UK population from ‘very low’ to ‘low’ and has concluded that while there is an increased likelihood that cases may arise in this country, we are well prepared and well equipped to deal with them.”

Nobody envisaged that by the end of September, the number of deaths attributed to COVID-19 would be over 42,000 in the UK, and still rising.

Scientists predicted many would have a minor flu-like illness and be unwell for around a week, but that fewer than 20% of people could have a much more serious illness and require hospital treatment. By October, globally over 38m people are believed to have had COVID-19 and over 1m have died – but the exact numbers may never be known as many people with a mild form of the disease may not have been tested. It is estimated the UK total with “long COVID” is already 60,000.

As yet there is no clinical case definition, GPs do not know how to recognise, diagnose, or treat “long COVID”. Social media is highlighting the stories of the “long haulers” and the newspapers and other media are interviewing doctors, professors, and scientists trying to establish what it is and what we can do to diagnose and treat “long COVID”.

What is “long COVID” and what is being done to treat it?

“Long” terminology here refers to something that lasts over an extended period of time. There is no indication as yet that anyone knows how to conclude “long COVID”. For a disease that might be over within a week or two, having lingering symptoms that last over six months is considered “long”. During these months, the symptoms (e.g. debilitating fatigue, poor memory, breathlessness) come and go, and vary in severity and type with people experiencing better days and worse days. We envisage many socio-economic implications in addition to the psychological and mental health impact of “long COVID.” With lost working time, the cost of long COVID to the UK economy could certainly impose significant financial penalties.

People who had the severe form of COVID-19 will have experienced hospitalisation and perhaps been in intensive care; they will have undergone numerous clinical examinations and clinical tests. They may have post-traumatic stress disorder (PTSD) and their lives may never be the same again.

Those who had the mild form of COVID-19 may never have had these medical tests, but could still go on to have “long COVID” – and may need testing for organ damage and clinical investigations required to explain the debilitating fatigue, cognitive difficulties, and similar symptoms.

Fatigue and breathlessness are probably the most common symptoms but there are many more being reported weekly. For “long COVID”, there are many reports of gastrointestinal, cardiological, respiratory and neurological symptoms – yet chest X-ray, MRI and CT scans may initially look normal or show only slight abnormalities.  Many of the major systems of the body can be affected, there may be four distinct syndromes. People commonly report lack of energy and brain fog (difficulties with memory and processing) which make normal life difficult. Accompanying all this is anxiety – whether about work and finances or depression caused by deterioration of cognitive functioning. The constant cycle of not knowing when a recovery and a return to normal can be predicted, and then the crushing disappointment when the severest symptoms return, must be exasperating.

People from all professions with “long COVID” report that they are often unable to carry out the simplest of tasks. Researchers have studied SARS, MERS and CFS (chronic fatigue syndrome) to see what lessons can be learned from recommending rehabilitation. Multidisciplinary teams are needed to ascertain if “long COVID” can be diagnosed early and treated by the correct specialists; can we stop it from progressing to the chronic condition? Sadly, as more people become infected with COVID-19 we can expect increases in the numbers with “long COVID”. Can we prevent it becoming post viral syndrome or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

Learning in near real time – from stories and experiences

COVID-19 is new and operates according to its own rules when it invades a human body. We must challenge and test every hypothesis and assumption until we find the answers we need to manage the virus.

Part of the challenge is that our most sensitive clinical tests are expensive and lab-based – we also need data from people that relies on self-report; for example fatigue, breathlessness, and brain fog are not yet calibrated on medical devices and need individual experiential reporting. Consumer wearables can detect step count and heart rate and respiratory rate but the practical experiences of palpitations and inability to get out of bed or make a cup of tea are very personal. Eventually we may be able to see and explain the patterns, but first we must focus on measuring, reporting, and analysing them. Understanding “long COVID” requires more personalised approaches and acceptance of more subjective reports.

How can we truly get to the core understanding that is needed to help people to reclaim their lives?

Social media is building the evidence today, in real time; people are sharing their daily ups and downs – despite sometimes only having the energy to write a few sentences. Perhaps they actually do not have the cognitive strength to cope with traditional research questionnaires – and have those questionnaires, the bedrock of gold-plated science, been validated for “long COVID”? No.

We rely on our researchers to construct new tools to investigate what is happening in real time – to understand what the patterns are. How do the symptoms vary with time and how can we relate this to our strong body of existing knowledge of mechanisms and manifestations?

Traditionally, there would be workshops and face-to-face interviews planned and undertaken by researchers – but social distancing means we rely more on phone, video consultation, and digital tools. Without these, how do we collect data and address the variation over time and the highly individual nature of the disease and the impact?

How can technology help? Can we fast-forward our data science tools?

To learn in real time while maintaining social distance from thousands of people who can barely get out of bed let alone out of the house, we need tools that can capture meaningful data at a sufficiently granular level and in a time-stamped sequence to be analysed for patterns – we need technology.

We must draw on research into personalised/precision medicine and use patient generated health data (PGHD). Precision medicine often refers to genomic studies and targeting drugs more effectively, but more broadly it can be summarised as being about prediction, prevention, personalisation and participation. We need to deploy advanced analytical methods and analyse time series of symptom data. We also need neurolinguistic programming to analyse the subjective experiences of “long COVID” sufferers with a large variety of backgrounds – cultural, genetic, and environmental, for example.

We cannot rule anything out – assumptions can be dangerous if not challenged and checked. We should analyse data from consumer wearables and social media and we must also understand the lived experiences of “long COVID” in a way that can guide care pathways. GPs, and indeed patients, need to know who needs to be investigated for organ damage and who has to stay at home and pace themselves.

We must combine “big data” with “little data” (sometimes called “small data”) to maximise the clinical overview of “long COVID”. “Little data” is what we know about ourselves, our choices, and our actions and how those make us feel. With “long COVID” people are struggling with everyday tasks and have to plan their time to accommodate reduced energy levels and cognitive constraints. People may need to learn to pace themselves better, adopting new habits and patterns. This is exactly where a digital diary (for example TIYGA™) which can be analysed for more nuanced effects could be invaluable. Combining such “little data” (individual level) with “big data” (population level, stratified by age, gender, ethnicity, lifestyle factors, comorbidities) can illuminate more personalised approaches and be delivered at scale. We must filter out the noise and focus on the patterns to link “long COVID” to our research clinical evidence of how our bodies are affected and constrained by the virus.

We need to co-produce new solutions; taking a multidisciplinary approach, and utilising technology and patient experience, will enhance our chances of success. COVID-19 feels like a long and winding road; we must combine all relevant knowledge to reach the right destination.

Katrina Delargy
Tiyga Health

Please note this is a contributor profile

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