An incomplete picture: understanding the burden of Long Covid

This report, supported by Pfizer and created by Economist Impact, investigates the burden of Long Covid globally and in eight countries of focus, analysing the societal, economic and health system challenges posed by this disease. It examines national priorities and guidelines and the local healthcare system’s response to Long Covid and emphasises the need for multidisciplinary, patient-centred care provision and integrated policy frameworks to address Long Covid.

ME Association Comment

“I was very pleased to be asked to be one of the UK representatives on the committee of international experts who helped to prepare this 76-page report with Economist Impact (part of the Economist Group) and the pharmaceutical company Pfizer. There were experts from all over the world. So there was bound to be differing views on some aspects of Long Covid.

“However, there was full agreement on the key messages. Although the main focus of the report was on social and economic aspects of Long Covid I would have liked to have seen more emphasis on the overlaps with ME/CFS. The most useful information for policy makers is probably the country by country information at the end of the report.”

Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.

Key Findings

• Disparate views on how to describe and study long Covid continue to inhibit understanding.
  To date, there is no generally accepted definition of Long Covid. Due to the wide variation in Long Covid manifestations and its relative novelty, several working definitions exist – with many specifying different symptomology and time periods – and some of these definitions do not encompass the experiences of all patients. The most cited definitions note that Long Covid appears to have sequelae because symptoms arise after the acute phase, but the reason is still unknown. The lack of agreement on the wording of a definition reflects varied approaches to symptomatology and time frames used across Long Covid-related medical records and research. Until these converge, it is impossible to aggregate the still limited information available to paint a complete picture of Long Covid.
• Long Covid’s physical symptoms suggest that it may represent a family of diseases, each capable of exerting a heavy individual burden.
  Any overview of Long Covid quickly turns into a list of statements with extensive qualifiers. The main risk factor for the condition is the severity of the original Covid infection. Still, even those with mild or asymptomatic cases may experience sequelae. Other risks include advanced age, female gender, a lack of vaccination when infected by Covid, unhealthy weight levels, regular smoking and the existence of long term prior health conditions.
  The most common symptoms are fatigue, shortness of breath and cognitive impairment (including ‘brain fog’ as encumbering as mild drunkenness). Yet, not all patients will have these symptoms; 200 other symptoms of Long Covid have been identified, which occur with varying frequency. These sequelae appear in clusters affecting different organs and body functions – cardiac and renal; respiratory, sleep and anxiety; musculoskeletal and nervous; and digestive and respiratory – groupings which suggest the possibility of distinct forms of Long Covid. Finally, certain symptoms sometimes disappear, but not always, and may reappear or change in number or nature over time. Other sequelae can involve the onset of permanent, new chronic diseases.
• The impact, especially on those most severely affected, can upend lives and finances.
  Patient surveys find that, while Long Covid typically has some effect on their everyday lives and finances, in most cases, the impact is described as some synonym of “a little.” Depending on the country, however, between 12% and 30% report serious impediments to day-to-day activities. Self-assessed quality of life scores tend to be lower for those living with Long Covid than among the overall population, but particularly so among those most severely affected (in one study, these individuals gave lower scores than those with metastatic cancer). Employment is also harder to maintain, especially in the absence of workplace accommodations. The associated economic difficulties may help explain the higher levels of housing insecurity among those with Long Covid. Finally, self-stigma is a common issue for these individuals.
• Prevalence reports in our study countries vary widely due to diverse methodologies, but experts estimate that between 2% and 7% of the population likely have Long Covid in some form.
  Early in the Covid-19 pandemic, studies showed very high levels of Long Covid among those hospitalised with acute infection. In some study countries, these findings remain the only information available. In a few – the United Kingdom (UK), United States (US), France and Japan – population-based studies typically give prevalence figures in the single digits, and experts interviewed in this study estimate the most likely figure is between 2% and 7%. While lower than initially feared, such numbers indicate patient numbers of the same order of magnitude as major non-communicable diseases (NCDs). Even for those with the most severe cases, the figures are in the same league as those for dementia. These are not estimates – the figures are not robust enough for that, let alone national or global health and financial burden calculations – but they do show the approximate size of what health systems are facing.
• Good practices are emerging in Long Covid care.
  Inevitably, health systems faced with a new and challenging problem have adopted a wide variety of arrangements to help those affected. Broadly speaking, three approaches are emerging:
  • Use the latest research to address specific symptoms.
    Without an idea of Long Covid’s cause, there is little prospect for a single cure given its multifaceted symptoms. Instead, clinicians need to focus on symptom alleviation. In some cases, this still relies on tools that have proven themselves in other contexts, but Long Covid-specific knowledge is growing. Rapid translation from bench to bedside is, therefore, essential.
  • Improve diagnosis.
    Health systems must not only offer treatment for those with Long Covid but also help patients find those services. Patient and clinician education, as well as active case-finding among poorly served groups, should be basic parts of better diagnosis. Moreover, clinicians should not put off diagnosis for some arbitrary time after acute infection, but act as soon as the need becomes apparent.
  • Create multidisciplinary, patientcentred care provision.
    As with other conditions with complex individual requirements, Long Covid care should begin with creating comprehensive treatment plans written jointly by the patient and a general practitioner, specialist or specialist committee. Based on the plan, the clinicians involved should arrange patient referrals to all the specialists needed in an individual’s case and follow up on progress overall.
  • Look beyond the medical.
    Care plans must address not only the health needs of patients but also, where relevant, their employment and social requirements. Support with return to work, securing workplace accommodations and references to social services are therefore essential.
• National policy frameworks to support those living with long Covid are often non-existent and, at best, under-developed.
  To provide for all the diverse needs of people with long Covid requires not just medical care but, in some cases, integrated employment and social support. In most of the countries in this study, there is no policy coordination across these areas. In others, halting steps have failed to gain legislative traction. Taiwan’s system of multidisciplinary medical provision, for instance, was dismantled when Covid there was reclassified from a pandemic to an endemic disease. The widest range of services formally open to those with long Covid are in the UK and US, but even in these countries, securing employment rights and disability payments can require legal action or sometimes opaque application processes.

Call to Action

Key points for policymakers and other stakeholders:

1. Find a common framework for the description and study of Long Covid: major public health actors need an agreed definition. Convergence around a standard set of metrics and key time periods is essential.
2. Prioritise data collection and better collation: the global community must learn more about Long Covid. Countries must use their limited data better, especially by leveraging existing disease registries.
3. Focus on prevention: preventing severe cases of Covid-19 can help to reduce the incidence of Long Covid. Preventative measures, such as vaccination and early treatment of acute Covid-19, may help to reduce individual risk of long-term sequelae.
4. Leverage effective tools for current symptom management: medical treatment should focus on alleviating specific symptoms. This is a joint task for researchers and clinicians.
5. Create multidisciplinary, patient-centered care pathways for those with Long Covid: diagnosis and individualised care plans are crucial. Patients should be linked to employment and social support where necessary.
6. Develop a coherent policy framework: effective delivery cannot occur solely within health systems. Policies outside of healthcare should complement multidisciplinary treatment.
7. Stay the course: Long Covid shows no sign of going away. The stakes are too high to leave so many people with insufficient care.