Long COVID: will the policy response lead it into the long grass?

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From the early weeks of the pandemic, people started reporting COVID-19 symptoms that were both different from the governments’ two main symptoms (a persistent cough and/or a high temperature) and were more long-lasting.

This blog describes what Long COVID is, how many people it effects, and how it is being treated and managed. Evidence of Long COVID emerged through people reporting otherwise inexplicable or ongoing symptoms via the ZOE symptom app, established in March 2020, and Facebook support groups, such as Long COVID Support, set up in May 2020. It is now recognised in national guidelines and the Scientific Advisory Group on Emergencies (SAGE) published this report in January 2021.

What is Long COVID?

Long COVID, also known as post-COVID-19 syndrome, is defined as:

“signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.”

Long COVID does not refer to the after effects of being hospitalised and ventilated as a result of COVID infection, but rather to the ongoing symptoms following even mild infection. Many of these infections won’t have been confirmed by testing if contracted before widespread testing (Pillar 2) was available from the early summer 2020. This makes the diagnosis of Long COVID difficult in many cases.

Many symptoms are associated with Long COVID. They can affect the following systems:

  • respiratory (lungs and airways)
  • cardiovascular (heart and circulation)
  • general (eg fatigue)
  • neurological (eg ‘brain fog’, confusion)
  • gastrointestinal (digestive system)
  • musculoskeletal
  • psychological/psychiatric (mental health)
  • ear, nose and throat
  • dermatological (skin).

In December 2020, the National Institute for Health and Care Excellence (NICE), along with Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) published a ‘rapid’ guideline for managing the long-term effects of COVID-19. See also the National Institute for Health Research Review of Living with COVID-19

As Long COVID tends to affect many parts of the body at once it does not fit easily into any medical discipline, and there is not currently any diagnostic test for the syndrome. A person might have to submit to referrals to different specialists with no conferring between them.

How many people are reporting symptoms of Long COVID?

A recent Office for National Statistics (ONS) study estimated that 79,000 people in Scotland had Long COVID symptoms, for more than four weeks after onset of COVID infection (tested and non-tested) (prevalence rate of 1.5%), and 50,000 for more than 12 weeks after (prevalence rate of 1%). Prevalence is higher in older women (39 – 65 years).

ONS also estimate that 60-70% of the UK population has antibodies to COVID-19, meaning that they have been exposed to the virus.

Chart showing estimates for those suffering from Long Covid in each of the UK nations in numbers and as a proportion of the population.

The per 100,000 figures should be used with caution. They do not include people staying in communal settings such as prisons, halls of residence, hospitals or care homes for example. The estimates for the cases in each nation are of the total population.

Is Long COVID different from other post-viral syndromes?

While there will have been no celebration of the suffering of others, for those (~20,000 Scots) with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), the attention given to Long COVID has been something of a ‘hallelujah’ moment. However, it is probably sensible to avoid conflating conditions because of apparent similarities. There are overlaps, and a ‘venn-diagram’ approach provides a better model for the conditions.

This article goes into some detail, but interestingly notes that medical professionals with Long COVID symptoms resist diagnosis of ME/CFS. This is understandable from at least two directions: the debilitating experience of some with ME/CFS can be long-lived, and sufferers and researchers have had to endure years of little or unhelpful support for people with the complex mix of symptoms. It is also important to note that some ME/CFS sufferers do not link their condition to a viral trigger. NHS Inform’s information on treatment for ME/CFS is not heartening because it doesn’t offer concrete treatments, and comprises measures to ease symptoms rather than to cure. Arguably, this is because research has not been prioritised and because symptoms can be so variable from person to person, as with Long COVID.

How is Long COVID being treated and managed?

Currently, people with Long COVID are being managed through primary care. However, treatment options are limited. In a letter to health boards in relation to primary and community care priorities, the Scottish Government said

“Over and above existing plans shared with Scottish Government on Primary Care Improvement Plans, Out of Hours enhancement and COVID vaccination, the Remobilisation Plans for 2021/22 should include… Plans to respond to any increased demand on services for rehabilitation, including but not exclusively related to Long COVID as set out in the Recovery and Rehabilitation Framework.”

The Framework makes no explicit mention of Long COVID. What is not yet clear is how well-placed primary care will be to meet the demand from 50,000 people experiencing Long COVID – which remains poorly understood.

The Scottish Government has partnered with Chest Heart and Stroke Scotland develop its Long COVID Support Service

NHS Grampian has set up a virtual Psychological Resilience Hub for those affected by the pandemic, but are also offering psychological screening to all those in the area hospitalised with COVID-19. Again, we see some risk of conflation. These individuals are unlikely to be suffering from Long COVID, but clearly require support longer term, and are easy to trace, unlike those who were not hospitalised but have ongoing symptoms.

Long COVID Research

In October 2020, the Royal Society published a paper which highlighted a number of questions that it considered “need urgent attention in clinical and laboratory research.” The Scottish Government’s Chief Scientist’s Office is funding a number of research projects, alongside other ongoing research with people who had confirmed COVID-19. This work should inform the diagnosis and treatment of those who were never tested, as well as those who were. The National Institute for Health Research (NIHR) has launched a £20m funding call, which is focussed on funding research which will help and support non-hospitalised individuals with Long COVID. Unsurprisingly, Long COVID research has a global focus.

How is Long COVID being managed in the rest of the UK?

NHS England does not separate out recovery from severe COVID-19 from Long COVID and describes how recovery might be supported by the establishment of specialist clinics.

In December 2020, NHS England announced £10 million to support a network of around 70 Long COVID clinics which are listed in the announcement.NHS Wales has taken a signposting approach to self-help resources and links. Long COVID is primarily being dealt with in primary care.

Should we have anticipated Long COVID?

Knowledge of post-viral syndromes is well established. Normally, post-viral symptoms improve over time until someone is well again, but it can take months, even years.  What remains unknown is how long symptoms of Long COVID will persist, and how many of the 50,000 people with symptoms lingering beyond 12 weeks, will join those with ME/CFS in enduring pain, neurological symptoms and fatigue etc. for much longer. How will they be best supported?

What next?

There are still many answered questions in relation to the prevalence, recovery and treatment for Long COVID. It doesn’t fit well with the assumptions inherent in how the NHS continues to be organised –to manage and treat discrete diseases and conditions. The interplay between all systems in the body is, of course, fully known these days, but the NHS remains structured into many separate specialisms. Discussion has started about the larger shadow that the pandemic will cast on long-term health – COVID-induced disability.

The NHS, secondary care in particular, focuses on curing disease rather than primary prevention. When the NHS started, the big killers were infectious diseases and diseases of poverty such as tuberculosis, rather than lifestyle diseases such as diabetes and heart disease. Cancer treatment was only in its infance. Prevention of infectious diseases was tackled with vaccination and improved public health and antibiotics. Diseases of poverty were addressed by population scale measures such as improved housing and clean water. Now, more chronic diseases dominate clinical demand. Ironically, this is partly due to the great success of the NHS in improving our life expectancy over the decades.

Now we know much more about the effect of lifestyle on ill health and so a new level of complexity and debate has entered. How much is a person responsible for their own health if they have an unhealthy lifestyle? What responsibility does the State have? Long COVID is not deemed to be a condition linked to lifestyle risk factors, but evidence clearly shows that people from deprived communities have suffered disproportionately from the effects of COVID-19. A consideration and analysis of Long COVID in the context of existing inequality is covered in the SPICe Briefing: Health Inequality and COVID-19 in Scotland.

It remains to be seen whether these disproportionate effects are also clearly seen in relation to Long COVID.

As is true for access to healthcare more generally, some from deprived communities could end up suffering for longer than those able, or willing, to access help earlier. Long COVID could further increase the gap in health outcomes and life expectancy between people living in the least and most deprived areas: a little understood condition that can affect so much in the body.

Anne Jepson, Senior Researcher, Health and Social Care