It's clear that some form of Covid-19 will be with us for some time to come. 1.7 million people in the UK are living with long Covid.
This is a large, well- documented, convergent cluster of clear physiological symptoms, and it is common to every part of the body. Many sufferers of my acquaintances were avid cyclists, runners, skiers and dancers, but are now disabled and unable to resume their former careers. Doctors and scientists around the world now consider this part of the symptom profile.
Many of the most severe and enduring long-haulers derive from the first UK infection wave just before the initial lockdown in March 2020. Even though it was clear from the beginning that the risk of long Covid was not related to the severity of the infection, there was still hope that with the large-scale deployment of effective vaccines and more recent waves of infections dominated by a somewhat less severe variant, there would be a decrease
The number of long Covid cases might be lower when most of the infections are breakthrough cases in the vaccine. The big, ongoing cases of the Delta, Omicron and BA.2 waves have brought a lot of new sufferers.
The chances of long Covid in those who are vaccine-vaccinated but suffer breakthrough infections may be halved, but when you apply this to the huge waves we have experienced, 3.5 million people are infectious at a given time.
Many of the new sufferers are children. Many new members develop long Covid after two, three or four bouts of reinfection, having escaped it first time around, according to Sammie Mcfarland at Long CovidKids.org.
There are more reports of sight, hearing and motor-function deficits, along with gastrointestinal pain, joint pain, rash, swelling and fatigue. The price is being paid for turning a blind eye to the high incidence of cases in schools over recent months.
Many people suffer repeat infections at three- or four-week intervals because of the large number of infections they have had in recent months. We don't know if Covid from the current period will be the same as the early waves, but we don't want to do this on our children.
It has been difficult to assess the trajectory of people's recovery from persistent symptoms, which has involved assessing those whose symptoms lasted three months but not six, compared with the smaller subset without improvement. A team at the University of Toronto followed up patients with persistent symptoms after they had been bitten by a bug. Many showed little recovery after a few years. The effects on education, the workforce and healthcare provision would be huge if this trend were applied to our current Omicron wave.
It's still early days for Covid research. The UK's strength in epidemiology research through survey data, such as the Office for National Statistics and ZOE, put us at the forefront of counting and led to the early push for dedicated clinics. This was important, but sufferers have become weary of questionnaires and surveys, looking for tangible progress on mechanisms and therapeutic trials.
In the early days of Covid, we and others put forward hypotheses to explain the disease process. The effects of the virus on diverse body organs, viral persistence, autoimmunity, and many more were covered. Small-scale studies have produced some interesting support for each of these, but we still don't have an overarching paradigm for understanding the disease that would allow comprehensive diagnostic testing.
People with long Covid led the charge to identify, characterise and initiate a research agenda for the new condition through hard work and proactive social media networks. They are now focused on testing potential treatments. Patients travelling abroad for expensive experimental treatments can sometimes feel pressure to trial everything from antivirals and anti-spike antibodies to anticoagulants and apheresis.
Sometimes approaches that have been heavily publicised do not pan out, while others are shown to work and change global management of patients.
Long Covid sufferers need a large-scale recovery trial to find out more about treatments. Many of the responses offered when they get to the front of the queue are about readjustment and rehabilitation in light of their new disability. They want their lives back.
Initial steps in this direction are offered by some current research programmes. The effectiveness of drugs will be compared in the Stimulate-ICP trial. A clinical trial at Oxford University is looking at whether a drug can treat fatigue.
Our thinking about long Covid has had to be changed on a monthly basis. This is now a highly infectious upper-respiratory virus able to reinfect repeatedly, an outcome that wasn't expected early in the pandemic. If we don't change the way we treat infections, we may be making a mistake for the rest of our lives. The nightmare of the original wave of lockdowns and deaths has become a distant memory.
Danny is a professor at Imperial College London. He has given advice to the Cabinet Office and the parliamentary group on Covid.
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