As the Covid inquiry prepares to hear evidence about Long Covid, a new survey reveals widespread awareness of the condition in the face of an absence of public health messaging.
But the data suggests there are particular groups lacking information and help. The NHS defines Long Covid as a post-viral syndrome of up to 15 symptoms that last longer than 4 weeks after a Covid19 infection, the most common being fatigue, shortness of breath.
“Brain fog”, dizziness, joint and muscle aches and advises people to contact their GP. The first of its kind, a new poll by YouGov of 2058 respondents for charity Long Covid SOS reveals the extent of British public awareness of the post-viral condition.
Only 7% of people believe Long Covid isn’t a real medical condition. One in three report personally knowing somebody with Long Covid, with 45% in this group knowing someone who has been “impacted a lot”.
These people with personal experience of the debilitating impact of Long Covid are twice as likely to be concerned about the condition than the average. Nearly one in seventeen people (6%) polled said they might have Long Covid but are not sure - of these, half (3%) don’t know where to go to get help.
Ondine Sherwood, CEO of Long Covid SOS said: “Covid levels are consistently high and we are sleepwalking into a health crisis.
“There is a perception that people ‘have moved on’: the government does little to update and promote information to encourage people to avoid infection, to get a diagnosis and to seek help. But despite this, the majority of Britons know the upsetting truth: Long Covid can strike anybody at any time and can limit their lives massively.
“Over four years on, it seems people are being left to learn the lessons of the pandemic the hard way - through the experience of their own illness and that of friends and family. The government needs to dedicate more resources to awareness and prevention and we need clear public health messaging: the only way to prevent Long Covid is to avoid a Covid infection.”
People in Wales, Scotland, and those who are unemployed or not working were more likely to respond: “I might have Long Covid, but I don’t know where to get help”. Amitava Banerjee, Long Covid SOS trustee and UCL Professor of Clinical Data Science said: “This data also hints at a real problem amongst minority ethnic groups - more research is needed and we need to do more to reach these communities, who have been hit hard by Covid and have a history of experiencing health inequities.
“In addition there is a significant minority of people who don’t know the facts about this condition, nor understand that it is indiscriminate and can impact anyone”. Professor Nisreen A Alwan Professor of Public Health at the University of Southampton said: “We know that Long Covid stigma is widespread, and many people are very careful telling others about their illness to avoid judgement and negative stereotyping.
“Unless we actively work to tackle such stigma and raise awareness among professionals and the public alike, health inequalities in relation to Long Covid are likely to widen.” The awareness of the potential impacts of Long Covid was markedly lower in Northern Ireland and London, and amongst the unemployed. While young people (18-24) and full-time students are the groups most likely to report personally knowing somebody with Long Covid, this youngest age bracket polled is also the most likely to say: “I don’t want to think about Long Covid”.
Despite widespread disinformation on social media about Long Covid, the numbers of people who describe themselves as “sceptical” of Long Covid (12%) or believe it is caused by the vaccine (5%) are relatively low. Men and 18–24-year-olds were more likely (9%) to believe Long Covid isn’t a real medical condition.
Long Covid SOS urges people who suspect they might have Long Covid to talk to their GP even if they never tested positive for Covid19. As awareness of this condition grows, the charity is asking the government to provide better public health messaging so that people understand how to avoid Long Covid and how to get help.
Long Covid SOS provides resources for patients and healthcare professionals, as well as support for people affected by the condition, campaigning for access to treatment, more research and better public information. All figures, unless otherwise stated, are from YouGov Plc.
Total sample size was 2058 adults. Fieldwork was undertaken between 30th September - 1st October 2024.
The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).
This omnibus polling was commissioned by Long Covid SOS, which is a UK charity advocating for recognition, research and rehabilitation for people with Long Covid. Long Covid SOS is staffed by volunteers.
The charity has played a major role in generating awareness of the condition through social media and press campaigning as well as by working directly with the NHS, researchers, relevant institutions and government. The poll is the first of its kind in the UK focusing on public awareness of Long Covid.
Other data previously available comes from the March 2024 ONS Winter Coronavirus (Covid-19) Infection Study, which estimated that just under 2m people had Long Covid in England and Scotland, with 381,000 having their lives impacted “a lot”. The 2024 GP Patient Survey conducted by the NHS found that 4.6% described themselves as having Long Covid, and 9.4% of patients were not sure.
Recent US research on awareness of Long Covid also revealed great disparities in awareness of the condition between social groups. The YouGov source data is available on request.
