I usually say that as a research topic ‘Long Covid’ found me.
In March 2020 I was busy with my research in cancer early diagnosis, learning health systems and artificial intelligence for improving diagnosis in primary care. I caught COVID-19 in mid-March, just before the first lockdown, with moderate symptoms; cough, fever, but my blood oxygen levels were fine.
On day 14 I went out for a ‘well again’ 35-mile training ride on the bike, having missed my usual routine of regular commuting and weekend rides. It felt great, but I haven’t been near a bike in the two years since. I crashed the next day with breathlessness, fever, malaise, fatigue, and great difficulty thinking clearly. I was off for two weeks then managed to get back to a nominal half-time flexible working for three months. Do a meeting for an hour, lie down for a bit, etc…
Like other ‘first wave’ people with Long Covid, I had to do a lot of networking and finding out about what might be going on, self-treating with over-the-counter antihistamines, learning about pacing and the use of yogic breathing in helping breathlessness. A social media group of doctors with Long Covid was extremely helpful. A bunch of us got together in January 2021 and wrote a guide to the investigation and management of the condition using an expert consensus-building, or Delphi technique. It was published in the British Journal of General Practice in August that year. I also did several media interviews to help publicise the condition.
What do we know about Long Covid?
In late 2020 I started to link up patient groups, GPs and specialists interested in research in Long Covid. Although getting research projects funded has been competitive, I was successful in jointly leading the £3.5 million LOCOMOTION study with Dr Manoj Sivan at Leeds University.
LOCOMOTION is a mixed-methods study of GP and Long Covid clinic practice, designed to improve the quality of care and assist in rapid translation of best practice to the NHS. It’s a big project with 10 clinic sites, so this is a good place to think about what we know now, almost two years in, about Long Covid and what the key issues are.
Firstly, we think it’s clear that Long Covid is a real thing. This may seem strange to say, but there are continual efforts by some media and others to claim that the condition is driven by psychological and environmental factors.
Understanding symptoms
Numerous studies around the world have shown similar, albeit a wide range of symptoms. Persistent symptoms affect about 10% of unvaccinated people, while vaccinated people have about half the risk. And half of people reporting Long COVID three months after infection are still unable to work at 12 months due to their debilitating symptoms. Due to overlapping symptoms with post-ICU syndrome (fatigue, breathlessness), it’s necessary to remove this group from analysis (who tend to be older, male and with other co-existing conditions). Being middle-aged, female sex, and having a history of asthma all appear to be risks for Long Covid, but not initial symptom severity.
While many symptoms are also common in the general population, at an individual level the degree of symptom severity, the number of them and the change in health from pre-COVID status are striking. We can see clear patterns of clinical syndromes that doctors can treat at least at symptom level; dysfunction of the autonomic nervous system; postural tachycardia (a sudden increase in heart rate after sitting up or standing); repeated allergic symptoms (termed Mast Cell Activation Syndrome); inflammation of the heart muscle; and perhaps most disabling of all for the many teachers and doctors who were heavily exposed to COVID-19 early on, difficulties with short term memory and ‘executive function’ (the ability to think through problems and get things done).
Bringing it all together
We are moving now to at least some suggestions as to what might tie all this together.
Long Covid is a disease of the cardiovascular system, where small blood vessels fail to regulate local blood flow, leading to problems with oxygenation of tissues, particularly under load. Hyperactive platelets and small blood clots have been found, and although their role is not fully accepted yet, further research on their diagnosis and treatment is an important area.
Other researchers at Imperial (such as Prof Danny Altmann) are looking at the role of T cells, autoimmunity, and the potential persistence of viral antigens as a trigger for Long Covid, but all this basic science work takes time. While others are looking to find new ways to diagnose, support and manage people with the condition. In the meantime, UCLH is launching several large randomised controlled trials of promising therapies (such as antihistamines, blood thinners and an anti-inflammatory drug).
As Prof David Nabarro, IGHI’s co-director and WHO Special Envoy on COVID-19, said at a recent All-Party Parliamentary Group on Coronavirus, it is clear that whatever happens with the relaxation of public health restrictions, the legacy of COVID-19 in long-term disability will remain with us. As a GP I am seeing patients at all stages of Long Covid from each successive wave. I can help them by managing their dysfunctional autonomic nervous system and MCAS, but this is only treating the symptoms. If ever there was a need for rapid basic science translation into therapies and clinical care, it is in Long Covid.
Our hope for LOCOMOTION is that it can act as a rapid clinical translational and follow-up platform going forward. Personally, I’m still very restricted in what I can do exercise-wise, and am still having some investigations. But I’m back 100% to working capacity, which is I suppose a blessing compared to many of my colleagues.
Professor Brendan Delaney is a research lead at IGHI’s NIHR Imperial Patient Safety Translational Research Centre, and Chair in Medical Informatics and Decision-Making,