Summary
The Office for National Statistics estimates that in December 2021, 1.2 million people in the UK were living with Long Covid. Long Covid is a condition characterised by ongoing symptoms that last for months and even years after an initial Covid-19 infection. It is a difficult condition to diagnose, and nearly two years since it was first seen, medical understanding of Long Covid is still limited.
People living with Long Covid often express frustration at misconceptions about the condition that are prevalent amongst medical professionals, policy makers and the general public. In this article, we highlight some of these myths, explain why they are inaccurate and describe the damage they can cause to people living with the condition.
Content
When a medical condition is not understood by the scientific and medical communities, it has a significant effect on the people who live with it. As well as having limited opportunities for treatment and support, in many cases patients find their symptoms are dismissed and myths about the condition become widespread.
But people living with Long Covid are working hard to unravel misconceptions surrounding the condition. The Long Covid community has a strong voice on social networks, bringing people together to raise awareness and campaign for better research and services. Since the condition began to surface at the beginning of the Covid-19 pandemic, people with Long Covid have highlighted some key misconceptions about the condition on social media - here are a few of them.
9 common myths about Long Covid
Myth #1: You will only get Long Covid if you have had a severe Covid-19 infection
Long Covid affects both people who were hospitalised with Covid-19 and those who experienced milder symptoms, or even no symptoms, at initial infection. The condition is common among those who were not hospitalised[1][2], with one research study finding that 35% of participants had at least one symptom seven months after initial infection.[3]
Myth #2: The Covid-19 vaccine prevents Long Covid
Vaccines do offer protection from Long Covid as they reduce the likelihood of initial Covid-19 infection; the best way to avoid Long Covid is to not catch Covid. But if you do catch Covid after vaccination, you can still develop Long Covid. The Office for National Statistics (ONS) found that in people who already had Long Covid, having the first dose of a vaccine reduced the prevalence of Long Covid symptoms by 13%, and the second dose by a further 9%[4] - not a particularly significant reduction.
Myth #3: Long Covid is just being ‘a bit tired’
A research study involving 3,762 people from July 2021 illustrated that Long Covid symptoms “affect multiple organ systems, with significant impacts on morbidity, mortality, and quality of life.”[5] Many people report having to give up work and struggling with everyday tasks due to the severity of their symptoms, which include:
- extreme tiredness (fatigue)
- shortness of breath, chest pain or tightness
- problems with memory and concentration ("brain fog")
- difficulty sleeping (insomnia)
- heart palpitations and dizziness
- pins and needles and joint pain
- depression and anxiety
- Tinnitus and earaches
- feeling sick, diarrhoea, stomach aches, loss of appetite
- a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
- rashes.[6]
But this list is not exhaustive and people are presenting with a wide range of symptoms - a study by the Patient Led Research Collaborative states that there are more than 200 symptoms that can indicate Long Covid.[7]
Asad Khan, a doctor with Long Covid, told Patient Safety Learning in June, “Since my initial infection I have suffered from persistent symptoms including palpitations, distressing skin rashes, disabling fatigue, cognitive issues and urinary incontinence. I have not yet been able to return to work.”
Myth #4: It’s rare
The Office for National Statistics estimates that on 2 December 2021, 1.2 million people in the UK were living with symptoms of Long Covid.[8] That equates to nearly 2% of the UK population, and the proportion of healthcare workers and teachers with Long Covid is higher.[9]
Myth #5: Only people with pre-existing conditions will get it
Research studies have shown that Long Covid symptoms and the development of new medical conditions after Covid-19 infection are more common in people with pre-existing conditions,[10] but the condition is by no means limited to more vulnerable groups.[11] One research study found that "in low-risk individuals, there were chronic symptoms and mild impairment in the heart, lung, liver, kidney and pancreas four months post-Covid-19," illustrating the potential severity of Long Covid for people with no pre-existing conditions.[12]
Myth #6: Long Covid clinics will fix you
The NHS set up dedicated Long Covid clinics in December 2020 to offer “physical and psychological assessments and refer patients to the right treatment and rehabilitation services.”[13] Some who have used these services have expressed frustration that they do not offer appropriate support to help deal with Long Covid symptoms. As there is so much more to learn about the condition, the treatment and support these clinics offer need to evolve as research provides more understanding.
The support that these specialist clinics can offer is also limited by availability, with some areas of the UK having no provision. One person with Long Covid said, “I sometimes feel... that I am coping with this disease on my own. This is why we need Long Covid clinics in every area.”[14] According to an anonymous member of the NHS Long Covid Taskforce, “only a fraction” of people with Long Covid have been able to access the clinics.[15]
Myth #7: Long Covid is all psychological
The symptoms of Long Covid are physical and can be dangerous and debilitating. Many people are frustrated with being told their symptoms are purely related to their mental health.
One individual says of her experience of asking for help with Long Covid symptoms, "I kept calling about new symptoms and I would be asked, 'How's your mental health doing?’... The implication being that these symptoms weren't treatable or weren't real pain."[16]
Psychologising illness is not a new phenomenon - people with other long-term conditions that cause chronic fatigue such as ME/CFS have faced ongoing battles to have their symptoms recognised as physiological. Some campaigners hope that the prevalence of Long Covid will draw attention and research towards other chronic fatigue and post-viral illnesses, for which so many are desperate for effective treatment.
Myth #8: Children can’t get Long Covid
‘Covid doesn’t make kids really sick’ has been a major message throughout the pandemic. But research shows that the long-term effects can be devastating for children. A UK study from August 2021 suggested that one in seven children still have symptoms 15 weeks after initial infection.[17] For some children, Long Covid symptoms severely impact their quality of life and long-term health.
One parent of a child with Long Covid said, “It’s incredibly difficult to manage it day to day. [She] can’t go to school, she’s too unwell.”[18]
Myth #9: You continue to be contagious with Covid-19 if you have Long Covid
Perhaps because of the link between the two conditions, some people with Long Covid report being refused services on the basis that they might be contagious, months after testing positive with an initial Covid-19 infection. But after the initial 10 days of infection, you can’t pass Covid-19 on to someone else,[19] even if you are still experiencing Long Covid symptoms.
Better understanding = better support
Unravelling these myths and other misconceptions about Long Covid will help reduce the strain on people living with the condition. If healthcare professionals and friends and family have more understanding, they will be better placed to provide support. The search for treatments that really make a difference needs to be supported by proper understanding of the condition; in order to achieve this, the medical community needs to listen and take on board the concerns of people with Long Covid.
If you have Long Covid and have experienced misconceptions or difficulty accessing medical support, please share your experiences with us in the comments below.
Related reading
Long Covid: Information gaps and the safety implications (7 June 2021)
Long Covid podcast: Claire Hastie - founder of Long Covid Support, & advocate (10 November 2021)
Children with Long Covid: Co-producing a specialist community public health nursing response (19 October 2021)
How will NHS staff with Long Covid be supported?
Living With Covid Recovery app allows Trusts to target care and gives Long Covid patients ongoing clinician support: An interview with Hannah Hylton
References
1 M Petersen, M Kristiansen, K Hanusson, et al. Long COVID in the Faroe Islands: A Longitudinal Study Among Nonhospitalized Patients. Clinical Infectious Diseases. 2021:73(11):4058–4063
2 S Havervall, A Rosell, M Phillipson et al. Symptoms and Functional Impairment Assessed 8 Months After Mild COVID-19 Among Health Care Workers. JAMA. 2021:325(19):2015-2016
3 M Augustin, P Schommers, M Stecher, et al. Post-COVID syndrome in non-hospitalised patients with COVID-19: a longitudinal prospective cohort study. 2021:6
4 Coronavirus (COVID-19) vaccination and self-reported long COVID in the UK: 25 October 2021. Office for National Statistics website. Last accessed 15 December 2021
5 H Davis, G Assaf, L McCorkell at al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. 2021:38
6 Long-term effects of coronavirus (long COVID). NHS website. Last accessed 15 December 2021
7 Long Covid information leaflet. Long Covid Support website. Last accessed 15 December 2021
8 Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 2 December 2021. Office for National Statistics website. Last accessed 15 December 2021
9 'Strain on NHS as tens of thousands of staff suffer long Covid'. The Guardian. 3 April 2021
10 S Daugherty, Y Gui, K Heath et al. Risk of clinical sequelae after the acute phase of SARS-CoV-2 infection: retrospective cohort study. BMJ. 2021:373:n1098
11 M Andrews and L Zuraw. 'Doctors Scramble to Understand Long Covid, but Causes and Prognosis Are Elusive'. Kaiser Health News. 22 April 2021
12 A Dennis, M Wanil, J Alberts et al. Multiorgan impairment in low-risk individuals with post-COVID-19 syndrome: a prospective, community-based study. BMJ Open. 2021;11
13 Long COVID patients to get help at more than 60 clinics. NHS England website.18 December 2020
14 We need Long Covid clinics in every area. Long Covid Support website. 3 November 2020
15 ‘Only a fraction’ of long Covid sufferers able to access NHS support clinics. Independent. 12 September 2021
16 She got ill when the pandemic hit - and still is, six months later. BBC. 1 September 2020
17 Long covid: One in seven children may still have symptoms 15 weeks after infection, data show. BMJ. 2021:374:n2157
18 Mum of child with long Covid calls for specialist clinics. STV News. 29 June 2021
19 Stay at home: guidance for households with possible or confirmed coronavirus (COVID-19) infection. UK Government website. updated 14 December 2021
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