BRitain’s next public health crisis is already looming: long Covid. The numbers are raw. According to the Office for National Statistics, 1.5million people in the UK have been long-suffering from Covid, 281,000 of whom are so ill that their ability to undertake daily activities has been “significantly” limited. That’s roughly the population of Bradford.
I know firsthand how debilitating Covid can be. I am only 23 years old. Before Covid hit, I had just graduated from Stanford University and was halfway through a master’s degree at Tsinghua University, Beijing, as a Schwarzman Fellow. However, I was seriously ill for a full year. My main symptom has been intense fatigue which has caused me to spend up to 16 hours a day in bed and when I get up I can’t do any strenuous activity without my symptoms getting worse. Long Covid has put my life almost completely on hold.
However, I did not receive any effective medical treatment. I am seen in London at the University College Hospital’s long-running Covid clinic, where I was prescribed antihistamines and given advice on how to manage my symptoms. Alas, none of these measures reduced my fatigue.
My experience is far from unique. None of the more than 80 specialist clinics in the NHS long Covid can offer effective long-haul treatments. But the clinics are not the main problem. The fundamental problem is that we are running out of treatments because research is not moving fast enough.
Long Covid is no longer a mystery. There is a growing body of biomedical research on its underlying pathophysiology. The main theories as to its causes include the presence of micro-clots in the blood and the continued persistence of the virus in the body. But even though we know a lot more about the disease than two years ago, widely available biomedical treatments remain a distant prospect. The search is moving far too slowly for the hundreds of thousands of long haulers, like me, desperate to get their lives back.
Much of the blame lies with our political leaders. The government has invested just £50million in lengthy Covid research. This is far from what is needed. Indeed, the all-party parliamentary group on coronavirus published a report last week which criticized the government for “not adequately funding” the long-running Covid research and called for spending £100m a year on finding treatments.
The underinvestment follows decades of underfunding of post-viral disease research. Myalgic encephalomyelitis (ME), also known as “chronic fatigue syndrome”, affects 250,000 people in the UK. It has a similar spectrum 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. If we had found effective treatments for EM, it is likely that we would now also have treatments for long Covid. But ME too was deprived of research funding. Worse still, in the UK most of this funding has gone to studies which understand that post-viral illnesses are primarily psychological – rather than physical – and therefore require psychological treatments.
The culmination of this deeply flawed approach was the 2011 Pace trial, a £5million study that initially claimed that cognitive behavioral 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 a long campaign by ME patients, the researchers quickly realized the data did not support the conclusions. In November 2020, the National Institute for Health and Care Excellence published a damning analysis of the Pace trial which found the quality of science had been ‘low’ or ‘very low’ and advised physicians not to offer patients ME GET or CBT.
Following this debacle, alongside growing biomedical research into the long Covid, we finally seem to have moved past the dark days of post-viral disease psychologization. But a lot of damage has been done; research is decades behind what it should be. Long Covid is an opportunity to change that – to finally find cures for post-viral illnesses. However, this will require investments on a scale well in excess of £50m. Moreover, that £50m pales in comparison to the economic impacts of the long Covid, particularly on jobs. Basically, the risk profile for long Covid is very different from Covid. While older people are most at risk of dying from Covid, people aged 35 to 49 are most likely to develop long Covid. In other words, the long Covid cuts people into their economic peak; studies estimate that almost half of long haulers need reduced working hours and around one in four cannot work at all. Long Covid is therefore likely one of the driving factors behind the current labor shortage. Companies are already feeling the crisis. A quarter of UK employers say the long Covid is now a leading cause of long-term illness-related absence.
Likewise, the long Covid promises to be an additional strain on the already overstretched NHS. Last but not least, handling hundreds of long-haul flights will be very expensive. More worryingly, more than 3% of healthcare workers have long had Covid – above the national average of 2.4% – likely due to their increased exposure to Covid. Even before Omicron, NHS staff had lost more than 2 million days due to long Covid-related absences. Social care and education are also significantly affected, as teachers and social workers have disproportionately had Covid for a long time.
In short, it threatens to affect nearly every sector of society and the economy, making that £50m figure increasingly irrational and miserly. It’s also important to think about all the talent and potential that is wasted while the long haulers wait for treatments to emerge.
Over the past two years, we’ve seen how quickly things can happen when governments, scientists and the pharmaceutical industry get to work on a problem. It is a triumph of human effort that a range of effective vaccines has been developed in record time. This urgency must now be applied to the battle against the long Covid. If we delay, hundreds of thousands of people will needlessly lose years of their lives to this brutal and relentless disease.