Five years on from the pandemic, long Covid remains a neglected public health legacy

Telegraph

20-03-2025

This month marks the fifth anniversary of the pandemic. No one was untouched by its effects, but for the majority of the population it is long forgotten, a memory they would rather erase.
However, there is a major neglected public health legacy that continues to affect large numbers of the population half a decade later: long Covid.
With an estimated 2.9 per cent of the UK population affected (2.2million at its peak, and 400 million globally), it is no small legacy, despite a former PM declaring it b-----t which he scrawled across a government memo on the subject in 2020.
Deciding the pandemic was over, departments of the former Health Protection Agency that were monitoring numbers were disbanded, thus ending reliable data collection nearly two years ago: a whitewashing of a very real and significant illness. The country moved on, but many of us with long Covid have been unable to.
Long Covid (or more accurately Post-Covid-19 Syndrome) is an umbrella term that encompasses a myriad of symptoms that largely fall into three phenotypes/groups based on clinical presentation.
Two hundred symptoms have been described with evidence of damage in 10 different organ systems, that can lead to severe and protracted impairment of function.
This diverse presentation can prove a diagnostic challenge, and to date there is no single diagnostic test. Nevertheless, the resulting burden of illness is high for both the individual and their families. It also has wider societal ramifications on the economy, with many of those affected not able to contribute as they had done previously. They also add to the already overburdened health service.
Our understanding of long Covid has come a long way since 2020 when increasing numbers of people not recovering from seemingly mild acute Covid-19 infections were presenting to their GPs. Many were dismissed as being histrionic, with their symptoms of breathing problems and rapid heart rates attributed to anxiety in response to lockdowns and the Pandemic, rather than the damage they had following infection with the virus.
In 2021, millions of pounds were poured into setting up dedicated clinics and research trials to try and understand the multitude of symptoms that seemed to follow acute infection, with the global scientific community coming together in an unprecedented way.
Slowly we are gaining a better understanding of the illness as studies from around the globe yield results, but the jigsaw of long Covid still has many pieces missing. As yet there is no unifying underlying mechanism, and it is likely that several mechanisms will account for the symptoms and damage occurring after infection.
But translating results into clinical care still has a long way to go. The Stimulate ICP and Legacy trials are due to yield answers in the coming months, with the former looking at 3 potential repurposed drugs, which are easily available to GPs to prescribe should any of them prove to be beneficial.
Ongoing research will bring more answers, but many of the grants awarded have not been renewed, and with the NHS capacity stretched, many long Covid clinics have had their funding cut, and some disbanded. From the outset medical care has been a postcode lottery, with many never seen at a long Covid clinic.
Whilst there remains an absence of any proven definitive treatment for the illness, adjunctive therapies that offer benefit have come to light. One such social prescribing intervention developed in 2020 is the English National Opera (ENO) Breathe programme for long Covid which was developed by the ENO in conjunction with doctors from Imperial College.
It uses singing techniques for breathing retraining to aid recovery following Covid-19, with its proven benefits published in the Lancet, and WHO's endorsement of it lending further weight. To date more than 4,000 of us have been through the programme – being creative in how to manage an illness when there is no hard scientific evidence for what to do or treat with, has been key.
Similar programmes have been set up around the UK and in other countries. In the Uk, you have to be referred by a long Covid NHS clinic.
With the lack of help through the usual NHS channels, many have turned to the plethora of unregulated treatments being offered at various private clinics. Lured with the seductive promise of 'we can get you better', people are prepared to part with large sums of money when nothing else is available: being offered a glimmer of hope when living in limbo in the uncharted territory of a new condition.
A huge lucrative economy has sprung up and continues to flourish offering such hopes and promises, and although anecdotally some have found benefit, most things being offered as 'treatments' lack evidence of efficacy. These have varied from the innocuous retreat centres offering an holistic approach to well-being with yoga, mud baths, mindfulness and Ozone therapy in beautiful rural or Alpine settings (prices range from between £3,000 and £17,000 a week), to those offering more invasive, but unproven, treatments with potentially serious side effects, such as (apheresis) blood washing, plasmapheresis (removal of antibodies), intravenous vitamins and triple anticoagulants.
Hyperbaric oxygen therapy, vitamin supplements, micronutrients, and antivirals are often additionally offered at further cost, with people spending anywhere between £10,000 and £50,000 in various clinics around the globe (both in Europe, and further afield in Thailand and South Africa). These eye-watering amounts are unaffordable to most, but some are prepared to spend their life savings, seriously damaging their already fragile bank balances.
It may be that at a later date some of these 'treatments' may prove to be beneficial, but rigorous clinical trials and regulation are needed to protect a vulnerable population who are willing to try anything to get better: doing something proactive provides agency.
Post-viral conditions have a long history of being neglected and poorly understood, and there are many that have the potential for long lived sequelae, such as SARS, influenza, Epstein Barr Virus (the cause of glandular fever), Ebola. Some sequelae may only last a few months, but others seem to have a natural life span of three or five years.
With funding cuts to long Covid clinics, some have pooled resources and manpower with pre-existing clinics for Chronic Fatigue Syndrome (CFS/ME). These have historically been poorly funded, but they have the expertise to help in managing some of the common symptoms such as post-exertional malaise.
Whilst the two conditions differ, there is overlap of some symptoms, and as research further unpicks the underlying mechanisms for long Covid these may prove to be applicable to other post-viral conditions. No other post-viral condition has had so much longitudinal data collected on it in large trials. For too long those with CFS have been neglected. Let's hope that the long Covid story will have positive ramifications for other neglected post viral conditions, desperate for some hope and care.
Some with long Covid, like myself, are getting better with time, some improving by learning how to manage their symptoms, and some have found that using repurposed drugs to manage particular symptoms can get them back to an acceptable level of functioning. Those lucky enough to be under the care of a long Covid clinic are not promised a cure: there is no magic bullet.
Current approaches to care are symptomatic and supportive, offering a needs-based service. Clinics aim is to help people manage their symptoms to a level that they are able to function better, and to return to work. Many have fully recovered, but hard data on how many have and the time frame to do so is lacking because most are discharged when they are at what is deemed to be an acceptable level of functioning.
For many just being heard for the first time, rather than being dismissed, or told their illness is all in their head can be a major start. This is a very real illness. But given the diverse presentations of the illness, there is no one size fits all management plan. Each management strategy has to be individualised.
So where are we five years on? Whilst our understanding has improved dramatically, we still have a long way to go. There is no unifying mechanism underlying the illness, and it is likely that it will be a combination of things. There is no single diagnostic test, and diagnostic criteria are wide and can prove complex to define. There is no definitive treatment, but we are certainly better at managing the condition and helping people get on the path of recovery back to a level that they can manage their everyday lives better and return to work.
For those affected it can be a long and very rocky road of recovery; I feel I'm finally coming off the physical, mental and emotional long Covid rollercoaster, but for many, half a decade later the effects of the pandemic are far from over.
Dr Joanna Herman is a Consultant in Infectious Diseases and freelance medical journalist
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