Member briefing: Understanding long COVID

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02 / 12 / 2020

This briefing provides an overview of what is currently known about long COVID, including the symptoms, incidence among people who have been infected with COVID-19 and how the government and NHS are responding. 

Key points

  • Many people who have had COVID-19 report that they continue to experience symptoms for a significant time after the initial infection. Characterised by a range of symptoms, including persistent fatigue, breathlessness and fatigue, long COVID is estimated to affect around 10 per cent of COVID-19 patients – around 60,000 people.
  • While most people recover slowly, the prognosis for those more severely affected is unclear. A number of studies are looking at the incidence of long COVID and how it affects people.
  • On October 7 2020, Sir Simon Stevens announced £10 million in additional local funding to address long COVID. The package of support includes rehabilitation centres, an online hub providing advice and information and tailored rehabilitation support, and upcoming National Institute for Health and Care Excellence (NICE) guidelines on managing long COVID.
  • The studies cited in this briefing are not yet peer reviewed, reflecting the early stages of research into long COVID.

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What is long COVID?

Long COVID has been defined as ‘COVID-19 that hasn’t got better yet’. It can affect people who experienced only mild symptoms. An article in the BMJ distinguishes between post-acute COVID-19, which is where symptoms last longer than three weeks, and chronic COVID-19, where symptoms continue beyond 12 weeks.

NICE, the Scottish Intercollegiate Guidelines Network and The Royal College of General Practitioners have defined it as: “Signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis. The condition usually presents with clusters of symptoms, often overlapping, which may change over time and can affect any system within the body. Many people with post-COVID-19 syndrome can also experience generalised pain, fatigue, persisting high temperature and psychiatric problems. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.

The authors of this study suggest that a positive COVID-19 test should not be a prerequisite for diagnosing long COVID given the limited availability of tests, particularly early on in the pandemic, and the incidence of false negatives. Diagnosis is based on medical assessment on the basis of a ‘history consistent with acute COVID-19 followed by a prolonged recovery.

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Symptoms

A wide range of symptoms have been reported. Most common are a cough, low-grade fever and fatigue. Other reported symptoms include: shortness of breath, chest pain, headaches, neurocognitive difficulties, muscle pains and weakness, gastrointestinal upset, rashes (including COVID toe), metabolic disruption (such as poor control of diabetes), thromboembolic conditions, and depression and other mental health conditions. Another study, based on the COVID-19 Symptoms Study, lists the characteristic symptoms of long COVID as fatigue, a headache, dyspnoea (difficulty breathing) and anosmia (loss of smell).

Three broad groups of long COVID patients have been identified:

  1. Those who are very ill with significant long-term organ damage, along with weakness and debility. Symptoms vary depending on which organs have been affected.
  2. Those who were not as ill in the acute stage but who have some evidence of long-term organ damage.
  3. Those with persistent symptoms but no persistent organ damage.

For some patients, such as those with blood clots, long COVID may be life threatening. For others, symptoms may be debilitating, such as fatigue that prevents them from working, but not life threatening.

A themed review published by NIHR cautions that it is as yet unclear whether people with long COVID are experiencing the same phenomenon, given the varied, multisystem symptoms reported. It suggests referring to it as ‘ongoing’ COVID-19’ or to ‘living with COVID-19’ rather than attributing symptoms to a single diagnosis.

A recent study discussed in the Lancet found that 78 of 100 patients in an observational cohort that had recovered from COVID-19 had abnormal findings on cardiovascular MRI, and 36 reported dyspnoea and unusual fatigue. The observational cohort was made up of patients recently recovered from COVID-19 illness identified from the University Hospital Frankfurt COVID-19 Registry between April and June 2020.

MedRxiv has published initial findings of an ongoing longitudinal study of the symptoms experienced by people who have recovered from acute COVID-19. It found that among a young, low-risk population, almost 70 per cent had impairment to one or more organs four months after initial symptoms. Among the 201 completed assessments, the most frequent symptoms reported included fatigue (98 per cent), muscle aches (88 per cent) and breathlessness (87 per cent); 42 per cent of respondents had ten or more symptoms. Two-thirds showed mild organ impairment to a single organ, and a quarter had multiorgan impairment. This was significantly associated with having been previously hospitalised for COVID-19.

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Incidence

On December 16, the ONS published findings from the Coronavirus Infection Survey on people’s experiences of symptoms five and 12 weeks post-infection. Of the 8,193 respondents between 22 April 22 and 7 December 7 2020, they estimate that 21 per cent still have at least one symptom, and 9.9 per cent at 12 weeks post-infection. At five5 weeks, 11.5 per cent reported they still had fatigue, 11.4 per cent had a cough, and 10.1 per cent had a headache. The median duration of symptoms following symptoms was 39.5 days. 

Written evidence submitted to the House of Lords inquiry on long COVID by Greenhalgh and Ladd notes that estimates of the levels of long COVID vary, but suggest the most accurate figures are likely to be that:

  • 10-20 per cent of people who have had COVID-19 are still unwell after three weeks
  • 1 per cent are still unwell after 12 weeks.

They argue that this means that at the time of writing (23 September 2020) there were probably 60,000 people with long COVID. This would mean that, for example, a GP practice with 20,000 patients in a high-incidence area would be likely to have up to:

  • 2,000 patients who have had COVID-19
  • 200 requiring a sick note for more than three weeks
  • 100 patients with some form of chronic problems
  • 10-20 patients with seriously debilitating problems.

Researchers at King’s College London carried out an analysis of 4,182 people who used the COVID-19 Symptom Study app. 13 per cent of this group reported symptoms lasting 28 days or longer, 4.5 per cent experienced symptoms for more than eight weeks, and 2 per cent reported symptoms beyond 12 weeks post infection.

A study carried out partially at UCLH/UCL followed people who had been hospitalised and who had had a positive COVID-19 test for a median of 54 days to assess their continuing symptoms. Of the 384 patients monitored, 53 per cent reported persistent breathlessness, 34 per cent had a cough, 69 per cent had fatigue and 14.6 per cent had depression.

An Italian study showed that 87 per cent of people with the novel coronavirus had at least one ongoing symptom after 60 days. In Holland, a poll (by Long Alliantie Nederland and Longfonds lung foundation) of 1,622 people afflicted with COVID-19 and found that nine in ten indicated they had a problem with simple daily activities. Of these, 91 per cent had not been in hospital and 6 per cent said their health was good after the virus – compared to 85 per cent before being infected.

Doctors in a Paris hospital reported that, on average, they saw around 30 ‘long-haulers’ every week between mid-May and late July. The average age of patients was 40 years, with four times more women than men.

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Risk factors

It is not known why some people take longer to recover from COVID-19 than others. Possible explanations include weak or absent antibody response, inflammatory or other immune responses, or post-traumatic stress disorder.

The King’s College London analysis found that people experiencing long-COVID symptoms were more likely to be older, female and have a high BMI. It also found an association between long COVID and having reported more than five symptoms in the first week of illness. While post-COVID-19 chronic pain can affect people of all ages, this seems to be more common in older patients.

Greenhalgh and Ladd note that there is little peer-reviewed data as yet on the risk factors for long COVID. They note that one study suggests 87 per cent of hospitalised patients with significant rates of hypertension, thyroid problems, immune disorders, chronic obstructive pulmonary disease and diabetes still have some symptoms at 60 days. They also cite a self-service from a large online patient community which found that 58 per cent of respondent had at least one pre-existing condition, such as asthma, vitamin D deficiency, acid reflux, or an autoimmune condition. Only 4.4 per cent of people reporting these conditions had been hospitalised.

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Treatment

The NIHR-themed review argues that as there is currently no cure for long COVID, health and social care support that goes beyond the individual to include family and carers, in a range of settings, is required. This reflects what the authors heard in focus groups with people in long COVID social media groups, who are looking for support to manage their condition.

The review argues that there is an urgent need to consider how to provide this support, including through the voluntary and community sector. Care needs to recognise the significant psychological and social impacts that long COVID will have if not adequately managed. 

NICE guidelines on treatment for long COVID are expected in December 2020. These will include what symptoms should prompt specialist referral, what interventions can help, and how best to deliver recovery and rehabilitation services.

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Policy response

In May 2020, a Seacole Rehabilitation Centre was opened in Surrey to support people with long-COVID symptoms. This was followed in July by the launch of an online hub, Your COVID Recovery, which offers advice and information about living with long COVID. More than 230,000 patients have used this since July.

On October 7, Sir Simon Stevens, the head of the NHS in England, announced £10 million of additional local funding to kick start and designate long COVID rehabilitation centres in every area of England. The package of support also stated that:

  • new guidance from NICE would set out the definition of long COVID
  • NICE clinical guidelines on long COVID expected to be published on 14 December
  • phase two of Your COVID Recovery to include a tailored rehabilitation plan
  • NIHR-funded research on long COVID with 10,000 patients
  • an NHS England and NHS Improvement Long COVID Taskforce to oversee support offered, bringing together patients, charities, researchers and clinicians to help manage the NHS approach to long COVID, and produce information and support for patients and healthcare staff.

More detail on the long COVID rehabilitation centres was provided on 15 November. Over 40 clinics are expected to be opened, spread across the regions.

The clinics will bring together doctors, nurses, therapists and other NHS staff to carry out physical and psychological assessments of those with enduring symptoms who have been hospitalised with COVID-19, officially diagnosed after a test, or who reasonably believe they had it. The clinics may be standalone, based within a hospital or at a GP surgery.

We are working to develop a fuller understanding of plans for long-COVID clinics. We understand that the £10 million funding allocation is currently sitting with NHSEI regional offices who are involved in the coordination. The funding allocation is until the end of March 2021.  

In November, NHS England and NHS Improvement published guidance on long/post-COVID clinics. This states that the clinic setting is for local determination, and could be based in primary, secondary or community services. A virtual element could also be considered. CCGs may use the NHS Standard Contract to commission post-COVID syndrome assessment and management clinics. The guidance sets out minimum expectations for the clinic:

  • Be available, following clinician referral, to all affected patients, whether hospitalised or not.
  • Have access to a multidisciplinary team of professionals to account for the multisystem nature of post-COVID syndrome.
  • Support collaboration across localities where patients needs require this.
  • Have age appropriate arrangements in place for managing children and young people with post-COVID syndrome including support for psychological needs.
  • Have access to diagnostic tests.
  • Ensure coverage of the population in that geography.
  • Have a plan for ensuring equity of access (bearing in mind many population groups have been disproportionately affected by COVID-19).
  • Have a local communications plan for raising awareness within the clinical community.
  • Have an external communication plan for informing and raising awareness with patients.

The guidance sets out the different patient pathways into the service and, while recognising that local areas may have developed their own, sets out the pathway published in the Royal College of Physicians House of Lords report. This includes clinical review using the Newcastle screening tool, and management options including admission to hospital, self-care groups, primary care management with community management if needed, and referral to specialist support or Your Covid Recovery. This could be through a post-COVID-19 single point of access for triage and signposting to support. 

We are expecting more detail to be published on the status of the clinics alongside the publication of the expected NICE guidance and updates to the Your COVID Recovery website. We would expect this to include detail on referrals and what measurements are being put in place to assess the number of patients or their specific symptoms, as well as any tracking of more detailed patient data that can help to forecast potential need going forward.

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NHS Confederation viewpoint

We look forward to greater detail on the proposed clinics, and the Your COVID Recovery website being published. Primary and community services have been supporting patients with long-COVID symptoms for months, and it is vital that there is clarity about the support available going forward, particularly beyond diagnosis.

We welcome the £10 million funding for support for long COVID, which will support the initial diagnostic screening of patients, but this will not be adequate to meet the full needs of those with the condition over time, particularly beyond March 2021. Community services and GPs are already managing a lot of this demand and are concerned about the pressures.

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