What I’ve learned on the front line against Long Covid

At this stage, the duration of the condition is as uncertain as what underlies it.

Graffiti depicting the logo of the NHS in Pontefract, northern England on April 3, 2020. (Photo By Getty)

There were familiar viral features: cough, diarrhoea, headache, nausea, fatigue and widespread muscle pain. But it was two bizarre symptoms – the constant heavy pressure on the chest, making it hard to breathe; and the burning feeling inside, as though the lungs themselves were on fire – that marked this out as a disease I had never encountered before.

By the time I’d assessed my first dozen or so cases in late March, I had developed a strong sense of how Covid-19 presents, which helped make it more obvious when I came across a patient who was starting to get into trouble. And as well as learning by experience, information about the disease was being collated and disseminated quickly to help front-line clinicians dealing with the first wave. News came that there seemed to be a time window in which the feared sudden deterioration typically occurred – between days six and ten.

I incorporated this immediately into my practice: letting patients in their first week know to watch out for a downturn, and to seek help promptly were one to occur. I also gave reassurance to those further along that recovery should shortly come. Because that was also what we were being told: if someone made it past the six- to ten-day danger zone, then two to three weeks should see them well again.

In my daytime practice, where I have continuity of care for my list of patients, I began to recognise something different. A cohort of Covid-19 patients kept contacting me, week after week. They didn’t know one another, and had no idea there were others reporting the same thing. There would be apparent recovery – even as much as a few days of feeling well – before they would be plunged back into the same constellation of symptoms they’d had in their original illness. Again and again. Dispiritingly.

At first, I conveyed reassurance: all illness is a spectrum; they must simply be taking longer to recover. But as weeks became months, that became increasingly untenable. I arranged face-to-face examinations, repeat blood tests, ECGs, chest X-rays. None were helpful. And I began writing about what I termed “relapsing-remitting Covid-19”. Several colleagues, and a fair few patients, made contact to say they were seeing or experiencing the same thing. Patients in the UK and several other countries – finding their doctors perplexed – were organising themselves into social media support groups. Eventually, the term “Long Covid” rose to the fore as the way to describe this phenomenon.

The most helpful thing I could do for my own patients was to connect them with others who were experiencing a similar thing. I certainly couldn’t give them any prognosis, nor any truthful reassurance that they would definitely recover, nor that their worries about permanent damage were unfounded. But I did ensure they knew I believed them. Too many patients elsewhere were being dismissed by their doctors, who were telling them it must all be anxiety; that there was nothing wrong. Which is, regrettably, what some doctors do when confronted by things they don’t understand.

We are still in the foothills, but I would describe three potentially overlapping groups under the term Long Covid. The first two largely concern patients hospitalised with severe disease. Anyone surviving prolonged ventilation in intensive care is susceptible to debilitation and trauma from the intrusive medical intervention that kept them alive. Then there are those who, unfortunately, are left dealing with distinct complications of Covid-19: those who sustained strokes and heart attacks, clots or scarring on the lungs, heart muscle or brain inflammation, kidney failure.

But the third group – which includes many patients who were never sick enough to require hospital admission – are those with this pattern of recurring bouts of stereotypical symptoms. It has taken some time to achieve recognition for their reality, but there are now ongoing research projects to try to discover what underlies it.

It will ultimately, I suspect, come down to the immune system, and potentially the initial viral load. We know the hepatitis B virus, for example, creates several distinct patterns of illness – asymptomatic infection; acute hepatitis that fully resolves; and a chronic persistent form that can ultimately cause life-limiting complications. Which pattern of disease an individual suffers depends in part on the way their immune system responds to the virus, which can in turn be affected by the initial viral load.

The duration of Long Covid is uncertain. Most of my patients do now appear to have recovered, their recrudescences finally petering out after four to five months. But there is one whose illness continues to recur six months later. For each patient it has been a journey of speculation and fear of the unknown. We are used – whatever our ailment – to our doctors at least being able to spell out what is likely to happen. With a disease like Long Covid that is simply not possible: we are learning alongside those who are suffering from it.

Research into the condition must continue long term. I wrote recently about a patient who had been recovered for several months, only to present again with peripheral neuropathy – painful malfunction in the nerves that conduct sensory information from the feet, hands and face. I cannot be sure that this was Covid-related, but there are other examples of viruses that lie dormant in neural tissue and later reactivate. Surveys of Long Covid patients suggest that peripheral neuropathy may indeed be linked to coronavirus, in which case my patient’s symptoms hint at the potential for Covid-19 to flare months after seeming to have resolved.

Hospitalisation and death rates in our second wave remain low; most cases are among the younger, “low risk” population. But the months as we enter deep winter will see many more patients contending with the demoralising, protracted ill-health that Long Covid entails.