Britain’s next public health crisis is already looming: long Covid. The numbers are stark. According to the Office for National Statistics, 1.5 million people in the UK have long Covid, 281,000 of whom are so ill that their ability to undertake day-to-day activities has been limited “a lot”. That’s roughly the population of Bradford.
I know first hand how debilitating long Covid can be. I’m only 23. Before Covid struck, I had just graduated from Stanford University and was halfway through a master’s degree at Tsinghua University, Beijing, as a Schwarzman scholar. However, I’ve been seriously ill for a full year. My main symptom has been an intense fatigue that has forced me to spend up to 16 hours a day in bed and, when I do get up, I can’t do any strenuous activity without my symptoms worsening. Long Covid has put my life almost completely on hold.
Yet I’ve received no effective medical treatment. I’m being seen in London at University College hospital’s long Covid clinic, where I’ve been prescribed antihistamines and given advice on how to manage my symptoms. Alas, neither measure has made a dent on my fatigue.
My experience is far from unique. None of the more than 80 specialist NHS long Covid clinics can offer longhaulers effective treatments. But the clinics aren’t the primary issue. The fundamental problem is that we lack treatments because research isn’t progressing fast enough.
Long Covid is no longer a mystery. There is a growing body of biomedical research on its underlying pathophysiology. The leading theories as to what causes it include the presence of micro-clots in the blood and the continuous persistence of the virus in the body. But even if we know far more about the illness than two years ago, widely available biomedical treatments remain a distant prospect. The research is moving far too slowly for the hundreds of thousands of longhaulers, such as myself, who are desperate to get their lives back.
Much of the fault for this lies with our political leaders. The government has put just £50m into long Covid research. This is nowhere near what is required. Indeed, the all-party parliamentary group on coronavirus last week released a report that criticised the government for “not adequately funding” long Covid research and called for £100m a year to be spent on researching treatments.
The underinvestment follows decades of underfunding for research into post-viral illnesses. Myalgic encephalomyelitis (ME), also known as “chronic fatigue syndrome”, affects 250,000 people in the UK. It has a similar array of symptoms to long Covid, including brain fog and fatigue. A study found that 46% of long Covid patients meet the diagnostic criteria for ME. Had we found effective treatments for ME, it is likely that we’d also now have treatments for long Covid. But ME too has been starved of research funding. Worse still, in the UK most of that funding has gone towards studies that understand post-viral illnesses as primarily psychological – rather than physical – and therefore requiring psychological treatments.
The climax of this deeply misguided approach was the 2011 Pace trial, a £5m study that initially claimed that cognitive behavioural therapy (CBT), a form of psychological rehabilitation often used for depression, and graded exercise therapy (GET) were effective treatments for ME. But when the trial data was finally made public after an extended campaign by ME patients, researchers quickly realised that the data did not support the conclusions. In November 2020, the National Institute for Health and Care Excellence published damning analysis of the Pace trial that found the quality of science had been “low” or “very low” and advised doctors not to offer ME patients GET or CBT.
Following this debacle, alongside the growing biomedical research into long Covid, we finally seem to be past the dark days of psychologising post-viral illnesses. But much damage has been done; research is decades behind where it should be. Long Covid is an opportunity to put this right – to finally find treatments for post-viral illnesses. However, this will require investment on a far grander scale than £50m. Furthermore, that £50m pales in comparison to the economic impacts of long Covid, particularly on employment. Crucially, the risk profile for long Covid is very different to that of Covid. Whereas the elderly are at greatest risk of dying because of Covid, people aged 35-49 are most likely to develop long Covid. In other words, long Covid cuts down people in their economic prime; studies estimate that nearly half of longhaulers require reduced working hours and roughly one in four cannot work at all. Long Covid is therefore probably one of the driving factors behind the current labour shortage. Companies are already feeling the crunch. A quarter of UK employers say long Covid is now one of the main causes of long-term, sickness-related absence.
Similarly, long Covid promises to be a further strain on the already overburdened NHS. Not least, providing care for hundreds of longhaulers will be very expensive. Most worryingly, more than 3% of healthcare workers have long Covid – above the national average of 2.4% – presumably due to their increased exposure to Covid. Even before Omicron, NHS staffers had lost more than 2m days due to long-Covid-related absences. Social care and education are also being significantly affected as teachers and social workers disproportionately have long Covid.
In short, it threatens to affect almost all sectors of society and the economy, making that £50m figure seem ever more irrational and miserly. It is also important to think of all the talent and potential that is being squandered while longhaulers wait for treatments to emerge.
Over the past two years, we’ve seen how quickly things can move when governments, scientists and the pharmaceutical industry apply themselves to a problem. It is a triumph of human endeavour that an array of effective vaccines was developed in record-breaking time. That urgency now needs to be applied to the battle against long Covid. If we dally, hundreds of thousands of people will needlessly lose years of their lives to this brutal and relentless illness.
