Two Million Brits Suffer Long Covid and a Third Have Had it for More Than Three Years – yet Pleas for Extra Funding Rejected

Groups representing Long Covid sufferers are “very disappointed” in a health minister’s response to pleas for additional funding for research into the illness as statistics recently showed that two million people were experiencing it – the majority for two or more years.

On 9 April, Long Covid SOS, Long Covid Kids, Long Covid Physio, and Long Covid Support wrote to junior health minister Maria Caulfield requesting an additional £80 million to reflect the size and seriousness of the problem. The figure would bring the UK in line with the US which allocated $515 million to its RECOVERY research study in February, noting that Long Covid “remains an unsolved, complex and urgent healthcare crisis”.

The groups highlighted that while the UK had been an early leader in Long Covid research, the most recent funding call was three years ago – £50 million was allocated through two National Institute for Health Care Research (NIHR) requests in 2020 and 2021.

Long Covid is defined as “symptoms continuing for more than four weeks after a confirmed or suspected Covid infection that were not explained by something else”, and according to statistics published by ONS on 25 April, Long Covid adversely affects the day-to-day activities of 1.5 million people, 74.7% of those with self-reported Long Covid. Just over 19%, 381,000 people, reported that their ability to undertake their day-to-day activities had been “limited a lot”. The data makes an argument for Long Covid to be considered a disability with 51.3% having had symptoms for two or more years and 30.6% having symptoms for more than three years. An Employment Tribunal case in 2020, concluded that a claimants’ symptoms of Long Covid met the definition of disability.

In her response to the funding request, Caulfield suggested researchers focus on extensions to existing projects and apply for grants through existing funding routes. “Extensions to projects are not equivalent to new funding”, the groups said in response, adding that “existing funding routes are not adequate for a new disease”.

As evidence of research that had received funding, Caulfield cited the PHARMA-LC study looking at how community pharmacies could provide support, and as a sign of success singled out the controversial REGAIN trial which uses a structured programme of exercise psychological support delivered online.

The groups’ letter set out concerns that existing research faced uncertainty while new applications for Long Covid research must compete with all other health conditions. The UK currently has only one publically funded clinical trial for therapeutics, STIMULATE-ICP, which had not been provided with further funding to enable new treatment arms for medicines such as antivirals. At the time of writing there are no trials for antivirals in the UK despite considerable evidence suggesting viral persistence may be a contributing factor to many people’s Long Covid. 

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The groups also said that the experience of those they represent suggests that many Long Covid clinics do not follow the NHS England guidance drawn up with the help of patient representatives. This situation is likely to worsen now that the central Long Covid team at NHS England has been disbanded as the government ends much of its Covid-specific funding.

Regarding the REGAIN trial Caulfield cited as a success, Long Covid SOS told Byline Times that the paper published by the trial did not achieve statistically significant results.  “This is concerning enough, but the study design will have also generated high levels of bias given the massive imbalance in terms of intervention between the two arms.” The participants were all patients hospitalised with Covid – Long Covid sufferers were overwhelmingly not – and excluded those with exercise intolerance, a symptom that up to 75% of people with Long Covid experience. Long Covid SOS concluded: “Anyone claiming REGAIN is a step forward in our ability to understand or treat Long Covid shows a lack of understanding of this condition, and needs to think again.”

The ONS statistics reveal that while the prevalence of Long Covid in children is lower than in adults, a substantial number are impacted; 111,816 children aged 3-17 yrs in England and Scotland were estimated to be affected by Long Covid in March 2024 when the survey was conducted. Almost 21,000 children describe their Long Covid as limiting their ability to undertake day-to-day activities a lot, while a further 60,744 were limited a little. 

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When the ONS last estimated Long Covid prevalence in March 2023, through the Covid Infection Survey (CIS), the estimated number of children impacted was 62,000 – suggesting a worrying upwards trend in this age group.

While most of those with Long Covid have been unwell for more than two years, 30% of cases identified by the ONS are relatively new cases with people developing symptoms since the last report was published in March 2023.

Long Covid can arise in previously infected people who may not have experienced prolonged symptoms before. Despite widespread vaccine take-up and a certain amount of population immunity via infection, Covid remains an ongoing health issue.