2. What is long COVID?

Overview

2.1Different long COVID definitions exist internationally and have become widely used in Australia. However, the Committee observed throughout its inquiry that the absence of a nationally agreed and consistent definition of ‘long COVID’[1] in Australia can create unnecessary barriers to providing patients living with the condition the support they need. The lack of a nationally consistent definition can also have implications for healthcare service providers, research, data collection, understanding the impact of long COVID on Australia’s overall health system and the development of best practice responses to prevention, diagnosis and treatment.

2.2Many submitters and witnesses to the inquiry called for Australia to agree and implement a consistent definition of long COVID, recognising the challenges associated with responding to an emerging health condition that remains poorly understood and variably defined.[2] Evidence received by the Committee indicated that achieving this would provide an improved foundation for Australia’s policy response and a basis for understanding long COVID’s impact on Australian society.[3]

2.3Many stakeholders shared their ideas for what Australia’s definition of long COVID should address, and for what purposes it should be used. For example, some suggested that Australia adopt the World Health Organization’s (WHO) definition or the definition developed by the United Kingdom’s National Institute for Health and Care Excellence (NICE), while others proposed that the definition should be informed by consultation.

2.4This chapter examines what is known about long COVID to date, including current definitions of long COVID, options for a nationally agreed definition, its prevalence, clinical features and symptoms, risk factors and prognosis.

Current definitions of long COVID

2.5Clinical definitions of long COVID developed by the WHO and NICE are the most widely used in Australia but have limitations.[4] Professor Paul Kelly, the Australian Government’s Chief Medical Officer, told the Committee that both definitions ‘are great for research purposes because they are so broad, but in terms of trying to understand [long COVID], we have to get beyond it.’[5]

2.6Both definitions are used throughout Australia. For example, the Department currently uses the NICE definition of long COVID:

The term ‘long COVID’ is generally used to describe both:

• ongoing symptomatic COVID-19 – COVID-19 symptoms lasting more than 4 weeks
• post-COVID-19 condition/syndrome – COVID-19 symptoms after 12 weeks that are not explained by an alternative diagnosis.[6]
  7. Currently, Australia’s states and territories generally use either the WHO definition (the Australian Capital Territory, NSW and Western Australia)[7], the NICE definition (Tasmania and Victoria)[8] or a combination of both (Queensland and South Australia).[9] The Northern Territory uses a more simplified definition: ‘Long COVID, now known as post-COVID conditions, is when some people continue to feel unwell 3 months after getting COVID-19.’[10]

World Health Organization definition

2.8The WHO defines a ‘post COVID-19 condition’, or ‘long COVID’ as:

…the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.[11]

2.9The WHO states that long COVID ‘can affect anyone exposed to SARS-CoV-2, regardless of age or severity of original symptoms.’[12]

2.10This clinical case definition was developed by the WHO in late 2021[13] and is widely used throughout Australia, including by the Burnet Institute[14], the University of New South Wales (UNSW) Fatigue Clinic and Research Program[15], and the long COVID clinic operating in the Nepean and Blue Mountains district.[16]

2.11Some submitters and witnesses were of the view that the WHO definition was ambiguous and in need of review. For example, Professor Tania Sorrell contended that the WHO definition was ‘too broad’ and required ‘updating to account for new knowledge’, including by factoring in comorbidities that may affect a person’s risk of developing long COVID.[17]

United Kingdom National Institute for Health and Care Excellence definition

2.12The set of clinical case definitions developed by NICE identify and diagnose ongoing effects of COVID-19 according to the length of time after acute COVID-19:[18]

Acute COVID-19

Signs and symptoms of COVID‑19 for up to 4 weeks.

Ongoing symptomatic COVID-19

Signs and symptoms of COVID‑19 from 4 weeks up to 12 weeks.

Post-COVID-19 syndrome

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. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.

In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. It includes both ongoing symptomatic COVID‑19 (from 4 to 12 weeks) and post‑COVID‑19 syndrome (12 weeks or more).[19]

2.13This definition distinguishes itself from the WHO definition as it considers long COVID to be present if symptoms of COVID-19 persist for four or more weeks following the initial infection, rather than twelve weeks stated in the WHO definition. The NICE definition considers persisting symptoms for twelve or more weeks to constitute ‘post-COVID-19 syndrome’.

2.14Australia’s National Clinical Evidence Taskforce[20] employed the NICE definitions of long COVID for the Australian Guidelines for the clinical care of people with COVID-19.[21] The guidelines define long COVID 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. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post COVID-19 condition may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.[22]

2.15The National Clinical Evidence Taskforce (Monash University) explained in its submission that this definition was developed through national expert consensus and aligns with international guidelines.[23] This definition is also used by the Sydney Children’s Hospital Network.[24]

What should Australia’s definition include?

2.16Many submitters and witnesses shared their ideas with the Committee about how Australia’s definition of long COVID should be developed, and what the definition should cover. This section summarises points grouped according to three broad themes that emerged in the debate regarding what Australia’s definition of long COVID should consider:

• the need for a definition applicable to both clinical and research purposes
• consultation on the definition
• possible overlap with other post-viral illnesses.

Applicability to clinical and research purposes

2.17The need for Australia’s definition of long COVID to be applicable to both clinical and research purposes was a core theme that emerged from the evidence received throughout this inquiry. Some submitters and witnesses commented on a dichotomy between existing definitions of long COVID and their pertinence to clinical versus research settings.

2.18For example, Professor Mark Morgan, Chair, Expert Committee for Quality Care, and Co-chair, National Clinical Evidence Taskforce Primary and Chronic Care Panel, RACGP explained that from the perspective of general practitioners (GPs):

Patients don't come to see GPs with long COVID; they come with distressing symptoms and signs. That can be a whole swathe of different conditions that might or might not be related to a previous COVID infection. We take a person-centred view, rather than a labelling view. Clear definitions are required for the research... But from the point of view of treating people, it's about what problems those people are experiencing and what's the best solution for those problems.[25]

2.19Professor Morgan also told the Committee that considering a person has long COVID when they have ongoing symptoms for at least four weeks after a COVID-19 infection may be more practical, since current definitions may result in some patients missing their opportunity to have their symptoms treated early. He explained:

…if you wait until 12 weeks before you assign a label of long COVID then you've missed an opportunity to intervene earlier with the sorts of strategies and rehabilitation that will work for a lot of people. Having symptoms beyond four weeks is where we start thinking, 'Okay, could this person's distress and symptoms be related to the COVID infection they've had?' That's when you start intervening in that way.[26]

2.20Some stakeholders emphasised that a nationally agreed and consistent definition of long COVID should be congruent with international definitions so that Australia can continue to make important and meaningful contributions to, and benefit from, global research.[27] For example, Professor Bennett said:

…having a consistent case definition that allows us to compare across studies or across time or across populations, because, fundamentally, if you don't do that, it's really hard to compare findings from one study to the next, and even in terms of length of follow-up and how it plays out, even looking at antiviral treatments; different trials follow up people for different periods of time in terms of their symptom resolution.[28]

2.21Further, Professor Bennett explained that the Public Health Association of Australia (PHAA):

…has gone with the broadest [definition] at the moment because we're still at the early stage. The risk of that is that it's not specific, and that you will include many other conditions where you do have that overlap with a variety of other pre-existing conditions, including other post-viral conditions, that have been noted and understood before. The risk is that, if you dilute it too much, you aren't actually getting the best benefit... I do think that it will evolve [and] that we will have different levels of case definition, some more inclusive, some more specific, as we start to look at this as a constellation of conditions and refine that.[29]

2.22The National Centre for Neuroimmunology and Emerging Diseases at Menzies Health Institute Queensland, in Griffith University, explained that the evolving definition of long COVID ‘significantly hinders diagnosis, health literacy and access to information.’[30]

2.23The Burnet Institute highlighted the differences between long COVID and post-acute conditions, arguing from the research perspective that:

…the definition of long COVID should include prolonged symptoms as well as post-acute conditions (eg cardiovascular conditions, neurological conditions and diabetes. This definition will need to be used for surveillance and research purposes, including to document the contribution of post-acute COVID to hospitalisation and deaths.[31]

2.24Conversely, the Australian Academy of Science and the Australian Academy of Health and Medical Sciences suggested the Committee consider whether separate definitions for clinical and research settings may be necessary.[32]

Consultation on the definition

2.25Noting the evidence emerging from medical literature about long COVID, some submitters identified the need for consultation on the definition of long COVID. For example, the Department of Health in Victoria recommended:

• The Commonwealth should lead the development of nationally consistent case definition, which could be informed by the recent drafting of Care of people after COVID by the National COVID-19 Clinical Evidence Taskforce. This definition should include both ‘long COVID’ symptoms and post-COVID conditions which may affect multiple organ systems, such as the increased risk of diabetes, heart attacks and strokes.
• A nationally consistent case definition will also support the development of long COVID resources for clinicians and patients.[33]
  26. Similarly, the long COVID clinic at St Vincent’s Hospital in Sydney recommended that the Australian Government establish an advisory body ‘to assist in providing evidence-based information on critical areas such as the definition of long COVID and the role of emerging treatments.’[34]
  27. Professor Sorrell also underlined the need for the definition to be ‘codeveloped or modified in collaboration with lived experience, clinical and diagnostic discipline experts, researchers, public health and health planners, and international colleagues’ to ensure it is easily understood and meaningful.[35]

Understanding long COVID

2.28This section examines what is known to date about the prevalence, clinical features and symptoms, risk factors and prognosis associated with long COVID.

Prevalence

2.29There is no national registry of long COVID cases in Australia[36] and estimates of its incidence and prevalence in both Australia and internationally remain problematic. Efforts to estimate the prevalence are impeded by varying definitions, varying descriptions of symptoms and a reliance on self-reported population-based cohorts.[37]

2.30The Burnet Institute considers that five to ten percent of people in Australia have persisting symptoms for three months, or twelve weeks, after an initial COVID-19 infection.[38] Contrary to the submission from the Department, the Burnet Institute was of the view that the nature and prevalence of long COVID in Australia is not unique compared to other countries, ‘even after accounting for high levels of vaccination prior to many people experiencing their first COVID-19 infection.’[39]

2.31The five per cent estimate is confirmed by several studies.[40] One Australian study followed 94percent of all COVID-19 cases diagnosed in New South Wales (NSW) between January and May 2020 prior to vaccination (2904 cases) and found that approximately fivepercent of people had persisting symptoms twelve weeks after their initial infection.[41]

2.32Another study by the Australian National University’s Centre for Social Research and Methods and the National Centre for Epidemiology and Population Health published in October 2022 followed the NICE definition of long COVID. This study estimated that ‘4.7percent of adult Australians have had or currently have post-COVID-19 syndrome (symptoms that lasted 3 months or more).’[42] Referencing this study, the Burnet Institute said that this equates to 500000 adults with long COVID in Australia three months after infection.[43]

2.33The Department of Health and Aged Care (the Department) summarised that recent estimates from international studies show between 3.6percent to 20percent of adults have persisting symptoms for at least twelve weeks after an initial COVID-19 infection.[44] While less is known about the prevalence of long COVID in children and young people, estimates indicate that between 1.6percent and 13percent have persisting symptoms for at least eight to twelve weeks.[45]

2.34Although these figures may appear low, the collective number is significant because it applies to the Australian population. ProfessorMargaret Hellard, Deputy Director of Programs at the Burnet Institute explained:

Depending on which figures you want to look at, it's generally quoted as being around three to five per cent. Some people might call that overs; some people might call that considerable unders… [I]n terms of the precision of it, if you have 10 million people infected, if it's three per cent, that's 300,000 people; if it's five per cent, that's 500,000 people; if it's one per cent, that's 100,000 people—they're all big numbers; if it's more, they're even bigger numbers—who have or have experienced long COVID.

Even if they're overestimates, in a disease where there's a high proportion of the community getting infected, then a small percentage becomes consequential.[46]

2.35The Australian Institute of Health and Welfare (AIHW) published a literature review of the scale and impact of long COVID in December 2022.[47] The AIHW observed that stricter definitions of long COVID generally led to more modest estimates of its prevalence.[48] For example:

The prevalence of post-COVID condition (>12 weeks) ranged from 8-17% in studies from the UK. The global prevalence of post-COVID condition was estimated to be 3.7% of all COVID-19 infections and 6.2% of symptomatic infections when only symptoms of fatigue, cognitive problems or shortness of breath were counted.[49]

2.36There is some debate whether international long COVID prevalence studies are applicable to the Australian context. The Department noted several factors that may influence the prevalence of long COVID in Australia:

Australia’s experience of COVID-19 differs from other countries who experienced larger outbreaks of the Alpha and Delta variants as well as outbreaks prior to COVID-19 vaccine availability. Australia has relatively high rates of vaccination, which is associated with reduced risk and severity of long COVID. Serological surveys amongst Australian blood donors indicate that around two thirds (65%) of adults in Australia were estimated to have had SARS-CoV-2 by the end of August 2022, compared to 17% in early March 2022 and 46% in early June 2022. Consequently, most people in Australia who have had COVID-19 have been infected with the Omicron variant, which has been the dominant variant in Australia since December 2021. Infection with Omicron has been associated with a lower risk for long COVID than infection with the Delta variant. Therefore, caution should be taken in applying extrapolations based on the experience of other countries to Australia.[50]

Clinical features and symptoms

2.37Long COVID has up to 200 diverse and non-specific symptoms, making recognition and diagnosis challenging. Each experience of long COVID is unique and symptoms can present differently in different people, ranging from mild to severe and persisting for varying periods of time. While progress is still underway to better understand the pathophysiology of long COVID[51], current knowledge indicates that long COVID is multisystem disease.[52]

2.38According to the Department and the WHO, more than 200 symptoms have been described in the medical literature about long COVID.[53] The most frequently reported symptoms include:

• respiratory symptoms: breathlessness, cough
• cardiovascular symptoms: chest tightness, chest pain, palpitations
• generalised symptoms: fatigue, fever, pain, reduced activity and functional level, reduced nutritional status and weight loss
• neurological symptoms: cognitive impairment (‘brain fog’, loss of concentration or memory issues), headache, sleep disturbance, autonomic dysfunction, peripheral neuropathy issues, dizziness, delirium (in older adults), mobility impairment, visual disturbance
• gastrointestinal symptoms: abdominal pain, nausea and vomiting, diarrhoea, weight loss and reduced appetite
• musculoskeletal symptoms: joint pain, muscle pain
• ear, nose and throat symptoms: tinnitus, earache, sore throat, dizziness, loss of taste and/or smell, nasal congestion
• dermatological symptoms: skin rashes, hair loss
• psychological symptoms: low mood, anxiety, intrusive memories, other psychological symptoms.[54]
  39. The Committee also received evidence regarding less common long COVID symptoms including impaired vision and balance. While these are less frequent, it was reported that these rarer symptoms can be severe.[55]
  40. Children experiencing symptoms of long COVID describe similar symptoms, particularly pain and fatigue.[56] The Australian Academy of Science and the Australian Academy of Health and Medical Sciences advocated for a ‘specific definition for children… particularly for those under 10 years of age, in whom there may be a potential interaction between long COVID and developmental milestones.’[57]
  41. The Committee heard about many of these symptoms in submissions from people with long COVID. The Committee also heard that the consequences of living with these symptoms permeate many aspects of life, leading to a range of adverse financial, social, mental health and educational impacts. Some submitters with severe long COVID told the Committee they are unable to leave the house, or unable to walk, due to their symptoms.[58] These impacts are discussed in more detail in Chapter4.
  42. The Royal Australian College of General Practitioners (RACGP) explained:

Patient experiences of long COVID vary but commonalities are present.

Common descriptors of long COVID symptoms include fatigue, generalised weakness, brain fog, and reduced concentration and attention span, as well as recurrent respiratory symptoms such as shortness of breath. Beyond these, there are a myriad of other concerning symptoms reported by patients. Many symptoms are consistent with other postviral syndromes and are all pervasive.

There is a level of uncertainty as to whether many post-COVID symptoms are an exacerbation of known or unknown preexisting illness from an initial COVID-19 infection or whether long COVID is considered a standalone diagnosis.[59]

2.43Some witnesses indicated there may be different types or variations of long COVID.[60] For example, the UNSW Fatigue Clinic and Research Program stated:

…it is clear that a subset of patients after acute COVID-19 infection reporting symptoms of Long COVID have lung or other end-organ damage as a result of pneumonitis, cardiac or neurological injury, or even psychological trauma during the acute illness; or may be experiencing the symptoms as a result of an exacerbation of pre-existing comorbidities. By contrast, it is now clear that another subset of patients with Long COVID have a post-viral fatigue syndrome, albeit with the addition of COVID-related symptoms (e.g., a persistent sensation of breathlessness, or anosmia). This latter subset of patients meet the diagnostic criteria for a post-infective fatigue syndrome (PIFS), that is, a medically- and psychiatrically-unexplained disabling chronic fatigue syndrome, following from documented acute infection, and associated with neurocognitive difficulties (‘brain fog’), unrefreshing sleep.[61]

2.44A submission from Ruth Newport stated that ‘Long Covid is a broad term for ongoing post Covid symptoms’ and suggested that it is generally possible to categorise these symptoms into five subtypes:

1Post-ICU [Intensive Care Unit] syndrome

2Objectively observable organ damage (lung, heart etc)

3Post viral fatigue (PVF, definition used in the first 6 months)

4ME/CFS type (diagnostic criteria require 6 months or more since acute onset)

5a combination of subtypes of 1-4.[62]

2.45Dr Anne Fletcher and Dr Luke Fletcher also suggested that long COVID may in fact constitute multiple conditions. They jointly submitted that ‘there are likely at least 3 distinct subsets of long COVID disease’, and nominated these as:

1patients with organ damage

2patients with post surgery or post intervention complications

3patients with ME/CFS-like illness.[63]

2.46Allied Health Professions Australia highlighted the findings of a 2022 meta-analysis study that examined the occurrence of three long COVID symptom clusters and estimated the incidence of symptom overlap based on data from 2020 and 2021.[64] The three types of symptom clusters used in this study were cognitive, respiratory and fatigue. As illustrated in Figure 3.1, the study estimated that many people with long COVID only experienced one of the three symptom clusters but overlap existed:

• 33.3 per cent experienced respiratory symptoms only
• 18.1per cent experienced fatigue symptoms only
• 10.1 per cent experienced cognitive symptoms only.[65]

Source: Allied Health Professions Australia, Submission 269, p. 4.

Risk factors

2.47While the exact causes of long COVID remain unknown at this time, several risk factors have emerged that may make a person more likely to develop long COVID. According to the Department of Health and Aged Care these factors include:

• female sex
• pre-existing health conditions (e.g., high blood pressure, asthma, diabetes, obesity)
• psychological stress and pre-existing mental health conditions
• increased severity of initial infection (such as requiring hospitalisation)
• socioeconomic deprivation.[66]
  48. Asthma Australia pointed out that Aboriginal and Torres Strait Islander peoples are one group at greater risk of developing long COVID due to a higher rate of health comorbidities, and other environmental factors limiting access to care. They explained:

…Aboriginal and Torres Strait Islander people faced disproportionate disadvantage during COVID and are at increased risk of long COVID due to the prevalence of comorbidities. People living in regional, rural and remote areas have their vulnerability compounded due to protracted waiting times, inability to access quality care, specialist treatment and specific investigations.[67]

2.49There is also growing literature that indicates age, vaccination status, the type of variant of the COVID infection and access to COVID-19 antivirals may also influence the risk of developing long COVID.[68] For example, RACGP submitted:

GPs have reported greater prevalence of long COVID in patients with existing chronic illness/comorbidities, the elderly and in people living with disability. A greater prevalence in females was noticed. It is also widely acknowledged people from culturally and linguistically diverse backgrounds and those in lower socioeconomic communities face additional challenges navigating the healthcare system and accessing timely care and support.[69]

2.50Professor Catherine Bennett, Chair in Epidemiology at Deakin University explained:

It's very hard to actually determine risk factors because they might be different sets of risk factors associated with these different disease pathways. That's one of the big epidemiological challenges, along with the fact that people are still using different definitions—or we're not trying to delineate different causal pathways within this constellation of conditions that are now starting to emerge and to be understood.[70]

2.51Risk factors for developing long COVID remains the subject of research. Research into long COVID is discussed in detail in Chapter 3.

Groups particularly vulnerable to severe long COVID

2.52The Committee received evidence about specific cohorts that may be more vulnerable to developing severe long COVID compared to the general population. This may be due to barriers to accessing healthcare and inadequate management of severe acute COVID-19 symptoms.[71]

2.53The Rural Doctors Association of Australia submitted:

Rural Australians and Aboriginal and Torres Strait Islander people experience higher rates of many chronic illnesses, comorbidities, risky health behaviours and shorter lifespans than people who live in more urban areas. This puts them at higher risk of severe outcomes from COVID-19. An under-resourced rural primary care sector… and hospitals that are not necessarily well equipped to isolate and treat people who have severe COVID illness, together with the “paucity of healthcare and other services in non-metropolitan areas, and the lack of reserve health system capacity, means that it is less feasible to “live with” circulating COVID-19, than in metropolitan areas”.[72]

2.54Dr Jason Agostino, Senior Medical Adviser at the National Aboriginal Community Controlled Organisation also emphasised the impacts of long COVID in Aboriginal communities may be more severe ‘due to the high percentage living in poverty or with significant financial stress, the high percentage with high psychological distress and the higher burden of chronic disease.’[73] Under reporting of long COVID is likely among Aboriginal and Torres Strait Islander peoples.

2.55National Disability Services told the Committee that the number of people with disability with long COVID cannot be quantified ‘due to providers not having the confidence to accurately differentiate between the symptoms as the result of previous COVID-19 infections or related to pre-existing health conditions.’[74]

Prognosis and recovery

2.56Prognosis for people diagnosed with long COVID is uncertain[75] and there is a lack of conclusive evidence about recovery periods. Many submitters described long COVID as a mass disabling event.[76]

2.57However, evidence is emerging that most people with long COVID will recover.[77] Associate Professor Louis Irving, Respiratory Physician, Post-COVID Clinic at Royal Melbourne Hospital gave the following example of recovery:

…a lot of patients get better over time, and our most severe patient—in fact, she was the stimulus for setting up this clinic—a young mother working as a medical scientist and leading an incredibly busy life and who was wheelchair- and bed-bound when we first saw her, is completely back to normal after two years. But it has been a long road, and it's required very careful ongoing treatment. Being able to reassure people that they're not going to be permanently damaged is part of the management.[78]

2.58The National Clinical Evidence Taskforce (Monash University) said that health prognosis appears to become worse with each repeated COVID-19 infection, emphasising the importance of prevention:

Long COVID follows a SARS-CoV-2 infection, and the impact of SARS-CoV-2 infections (based on available evidence) appears to be cumulative… - i.e. the health prognosis becomes poorer with each additional infection. Thus, aiming towards limiting the number of SARS-CoV-2 infections is a logical way to minimise the potential (and somewhat unknown - at this stage) impact of long COVID and repeated SARS-CoV2 infections.[79]

2.59Professor Steven Faux and Associate Professor Anthony Byrne from the long COVID clinic at St Vincent’s Hospital explained:

With respect to the prognosis of the long COVID condition. In our experience the median (most common) time of reporting of improvement in ongoing symptoms varies between strains. Earlier strains like Delta lasting longer that latter strains such as omicron.

At our clinic we are seeing improvements in function and the commencement of a graduated return to work at 6 months. These patients are on the road to recovery by that time, but have not achieved their optimum recovery.

The NSW Dept. of health has quoted a median time for recovery from long COVID from omicron as 4 months and delta as 8 months.

As the syndrome is emerging it is hard to say how long it will take to return to pre COVID levels of function and overall health. The consensus of opinion seems to be 9-12 months or more and in the UK they are considering that long COVID could represent a disability…[80]

2.60Professor Greg Dore, Professor and Epidemiologist at the Kirby Institute suggested that vaccination status may speed up long COVID recovery:

My hypothesis is that people pre-vaccination have a higher risk of long COVID, but also their recovery is more prolonged. I'm still seeing patients that are two years out from acute COVID, with long COVID symptoms. Vaccination clearly reduces the individual risk. But we're seeing a larger number of cases because of how much COVID has been around, but the hypothesis is that the recovery will also be somewhat more rapid in the post-vaccination era.[81]

2.61COVID-19 vaccines as a possible method to prevent long COVID is discussed in Chapter 5.

2.62Some submitters and witnesses informed the Committee that prognosis for long COVID may be worse in people with co-morbidities.[82] For example, Dr Graeme Exelby observed ‘poor prognosis in obesity, diabetes, hypertension, and atherosclerosis.’[83]

2.63The Committee also heard that the ambiguity regarding prognosis is difficult.[84] For example, one submitter said:

The uncertainty of navigating a largely unknown medical condition with untested treatment pathways, unknown timelines, and unknown prognosis has been a significant psychological challenge.[85]

2.64Given this uncertainty, the Rehabilitation Medicine Society of Australia and New Zealand emphasised:

…the general health literacy of the public is variable at best, and in order to assist people to live with the uncertainty of the prognosis of long COVID, it is paramount to improve their general understanding of long COVID, its management and prognosis. Further skills need to be taught regarding pacing of activities and living with a measure of uncertainty, that is associated with long COVID.[86]

2.65Self-management tools and resources for individuals with long COVID are discussed further in Chapter 6.

Committee comment

2.66The Committee recognises the need for an agreed and consistent definition of long COVID to be used in Australia and is concerned that its absence may delay diagnosis and prevent patients from accessing necessary treatment, care and support to manage their symptoms. In particular, the Committee is concerned that the patchwork of definitions of long COVID used across each of Australia’s states and territories may lead to inequities in patient access to care.

2.67The Committees believes that a nationally agreed and consistent definition of long COVID is a practical solution to improving:

• understanding of the impact of long COVID across Australia’s overall healthcare system
• the utility of research and data regarding long COVID
• the development of best practice responses to prevention, diagnosis and treatment.
  68. The Committee notes that while there is still much to learn about long COVID and its prognosis, it has heard that many people do recover from this illness. However, recovery can take a prolonged period of time and is associated with biopsychosocial and economic impacts.
  69. The Committee appreciates that the definition of long COVID will need to evolve in accordance with emerging research and is persuaded that it should also evolve to align with international practice. Notwithstanding this, the Committee considers that for now, the WHO definition of long COVID should be used clinically, noting that the decision to initiate treatment would be at the discretion of the clinician who may want to start from an earlier timepoint being four weeks.

Footnotes

[1]Other terms that have been used in the literature to describe similar symptoms include ‘post-acute COVID’, ‘post COVID’, ‘late sequela COVID’, ‘chronic COVID’, ‘persistent COVID’, ‘COVID long haulers’, and ‘post-acute sequelae of SARS-CoV-2’ (PASC)’. Australian Institute of Health and Welfare, Long COVID in Australia – a review of the literature, www.aihw.gov.au/reports/covid-19/long-covid-in-australia-a-review-of-the-literature/summary, p. 7, viewed 6 March 2023.

[2]See, for example: Department of Health (Victoria), Submission 87, pages 1, 3; Burnet Institute, Submission149, p. 2; Royal Australian College of General Practitioners, Submission 168, pages 4–5; Moderna Australia, Submission 170, p. 2; Avant Mutual Group, Submission205, p. 4; Australian Healthcare and Hospital Association, Submission 283, p. 2; Pharmaceutical Society of Australia, Submission 293, p. 4; Lung Foundation Australia, Submission 294, p.22; Rural Doctors Association of Australia, Submission 362, pages4, 6; BOD Science, Submission 560, p. 2.

[3]See, for example: Professor Lena Sanci, Head, Department of General Practice and Primary Care, Melbourne Medical School, The University of Melbourne, Committee Hansard, Canberra, 17 February 2023, p.63; Professor Tania Sorrell, Fellow, Australian Academy of Health and Medical Sciences; and Ambassador, Sydney Institute for Infectious Diseases, Committee Hansard, Canberra, 17 February 2023, p.40.

[4]Department of Health and Aged Care, Submission 196, p. 5. See also, Australian Academy of Science and Australian Academy of Health and Medical Sciences, Submission 165, pages 3–4.

[5]Professor Paul Kelly, Chief Medical Officer, Department of Health and Aged Care, Committee Hansard, Canberra, 17 February 2023, p. 11.

[6]Department of Health and Aged Care, Long COVID, www.health.gov.au/health-alerts/covid-19/testing-positive/long-covid, viewed 1 March 2023. See also: Department of Health and Aged Care, Getting help for long COVID, https://www.health.gov.au/resources/publications/getting-help-for-long-covid, p. 1, viewed 26 March 2023.

[7]ACT Government, Long COVID, www.covid19.act.gov.au/stay-safe-and-healthy/long-covid, viewed 1 March 2023; New South Wales Government, Long COVID, 14 January 2023, www.nsw.gov.au/covid-19/testing-managing/long-covid#toc-what-is-long-covid, viewed 1 March 2023; Department of Health (WesternAustralia), Submission 273, p. 2.

[8]Department of Health Tasmania, Post COVID-19 condition (Long COVID), www.health.tas.gov.au/health-topics/coronavirus-covid-19/what-do-if-you-test-positive/post-covid-19-condition-long-covid, viewed 1 March 2023; Department of Health (Victoria), Submission 87, p. 2.

[9]Queensland Health, COVID-19 recovery and long COVID-19,www.health.qld.gov.au/clinical-practice/guidelines-procedures/novel-coronavirus-qld-clinicians/covid-19-recovery-and-long-covid-19, viewed 1 March 2023; SA Health, Long COVID or post COVID-19 syndrome, www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/conditions/infectious+diseases/covid-19/health+professionals/covid-19+information+for+general+practice+and+primary+care/long+covid, viewed 1 March 2023.

[10]NT Health, Long COVID or post-COVID-19 conditions, health.nt.gov.au/covid-19/managing-covid-19/long-covid-or-post-covid-19-conditions, viewed 31 March 2023.

[11]World Health Organization, Post COVID-19 condition (Long COVID), www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition, viewed 28February2023.

[12]World Health Organization, Post COVID-19 condition (Long COVID), www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition, viewed 28February2023.

[13]World Health Organization, A clinical case definition of post COVID-19 condition by a Delphi consensus, www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1, viewed 7 March 2023.

[14]Burnet Institute, Submission 149, p. 4.

[15]UNSW Fatigue Clinic and Research Program, Submission 289, p. 1.

[16]Dr Archana Sud, Infectious Diseases Physician and Clinical Director Medicine, Nepean and Blue Mountain Local Health District, Committee Hansard, Liverpool, 5 December 2022, p. 5. See also: Australian Physiotherapy Association, Submission 126, p. 6; VPACS – Victorian Post Acute COVID-19 Sequelae Research Group, Submission 290, p. 1.

[17]Professor Tania Sorrell, Fellow, Australian Academy of Health and Medical Sciences and Ambassador, Sydney Institute for Infectious Diseases, Committee Hansard, Canberra, 17 February 2023, p. 40. See also, Australian Academy of Science and the Australian Academy of Health and Medical Sciences, Submission165.1, p. 7; Dr Tuan-Anh Nguyen, Head of Department, Senior Staff Specialist, Rehabilitation Medicine, Campbelltown Hospital, Committee Hansard, Liverpool, 5 December 2022, p. 34.

[18]Department of Health and Aged Care, Submission 196, p. 5.

[19]National Institute for Health and Care Excellence, COVID-19 rapid guideline: managing the long-term effects of COVID-19, www.nice.org.uk/guidance/ng188/resources/covid19-rapid-guideline-managing-the-longterm-effects-of-covid19-pdf-51035515742, p. 5, viewed 28 February 2023.

[20]The National Clinical Evidence Taskforce is a multi-disciplinary collaboration of 35 member organisations who share a commitment to provide national evidence-based treatment guidelines for urgent and emerging diseases. See, National Clinical COVID-19 Evidence Taskforce, Caring for people with COVID-19, www.clinicalevidence.net.au, viewed 28 February 2023.

[21]Department of Health and Aged Care, Submission 196, p. 6.

[22]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 5.

[23]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 5.

[24]Associate Professor Philip Britton, Staff Specialist, Sydney Children’s Hospital Network, Committee Hansard, Liverpool, 5 December 2022, p. 20.

[25]Professor Mark Morgan, Chair, Expert Committee for Quality Care, and Co-chair, National Clinical Evidence Taskforce Primary and Chronic Care Panel, Royal Australian College of General Practitioners, Committee Hansard, Malvern, 20 February 2023, p. 13.

[26]Professor Mark Morgan, Chair, Expert Committee for Quality Care, and Co-chair, National Clinical Evidence Taskforce Primary and Chronic Care Panel, Royal Australian College of General Practitioners, Committee Hansard, Malvern, 20 February 2023, p. 14.

[27]See, for example: Australian Academy of Science and the Australian Academy of Health and Medical Sciences, Submission 165.1, p. 1; Professor Catherine Bennett, Alfred Deakin Professor and Chair in Epidemiology, Deakin University; and Expert Epidemiologist, Public Health Association of Australia, Committee Hansard, Canberra, 12 October 2022, p.31.

[28]Professor Catherine Bennett, Chair in Epidemiology, Deakin University, Committee Hansard, Canberra, 12 October 2022, p.31.

[29]Professor Catherine Bennett, Chair in Epidemiology, Deakin University, Committee Hansard, Malvern, 20 February 2022, p.9.

[30]National Centre for Neuroimmunology and Emerging Diseases, MHIQ, Griffith University, Submission 215, p.3.

[31]Burnet Institute, Submission 149, p. 2.

[32]Australian Academy of Science and the Australian Academy of Health and Medical Sciences, Submission165.1, pages 1, 9.

[33]Department of Health (Victoria), Submission 87, p. 3.

[34]Long COVID Clinic St Vincent’s Hospital Sydney, Submission 287, p. 1.

[35]Professor Tania Sorrell, Fellow, Australian Academy of Health and Medical Sciences; and Ambassador, Sydney Institute for Infectious Diseases, Committee Hansard, Canberra, 17 February 2023, p. 41. Seealso: Australian Academy of Science and the Australian Academy of Health and Medical Sciences, Submission 165.1, p. 9.

[36]Public Health Association of Australia, Submission 351, p. 5.

[37]See, for example: Professor Peter Wark, Submission 134, p. 5; Burnet Institute, Submission 149 (Attachment A), p. 1; Moderna Australia, Submission 170, p. 7; Murdoch Children’s Research Institute, Submission, 178, p. 8; National Clinical Evidence Taskforce (Monash University), Submission 232, p. 5; The University of Melbourne – Faculty of Medicine, Dentistry and Health Sciences, Submission 237, p. 5; Lung Foundation Australia, Submission 294, p. 12; OzSAGE, Submission 299, p. 2; The George Institute for Global Health, Submission 514, p. 3.

[38]Burnet Institute, Submission 149, p. 1.

[39]Burnet Institute, Submission 149, p. 4.

[40]Department of Health and Aged Care, Submission 196, p. 8.

[41]B Liu et al., ‘Whole of population-based cohort study of recovery time from COVID-19 in New South Wales Australia’, The Lancet Regional Health – Western Pacific,pubmed.ncbi.nlm.nih.gov/34189493/, viewed 6March 2023.

[42]N Biddle and R Korda, ‘The experience of COVID-19 in Australia, including long-COVID – Evidence from the COVID-19 Impact Monitoring Survey Series, August 2022’, The Australian National University Centre for Social Research and Methods and the National Centre for Epidemiology and Population Health, The Australian National University, csrm.cass.anu.edu.au/sites/default/files/docs/2022/10/The_experience_of_COVID-19_in_Australia_-_For_web.pdf, viewed 6 March 2023.

[43]Burnet Institute, Submission 149, p. 5.

[44]Department of Health and Aged Care, Submission 196, p. 8.

[45]Department of Health and Aged Care, Submission 196, p. 8.

[46]Professor Margaret Hellard, Deputy Director, Programs, Burnet Institute, Committee Hansard, Canberra, 12October2022, p. 19.

[47]Australian Institute of Health and Welfare, Long COVID in Australia – a review of the literature, www.aihw.gov.au/reports/covid-19/long-covid-in-australia-a-review-of-the-literature/summary, viewed 6March 2023.

[48]Department of Health and Aged Care, Submission 196, p. 30.

[49]Department of Health and Aged Care, Submission 196, p. 30.

[50]Department of Health and Aged Care, Submission 196, p. 8, citations omitted. See also, Royal Australian College of General Practitioners, Submission 168, p. 6.

[51]Department of Health and Aged Care, Submission 196, p. 7.

[52]See, for example: Australian Physiotherapy Association, Submission 126, p. 13; Department of Health and Aged Care, Submission 196, p. 29; Professor Kerryn Phelps AM, Submission 510, p. 2.

[53]Department of Health and Aged Care, Submission 196, p. 6; World Health Organization, Post COVID-19 condition (Long COVID), www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition, viewed 28February2023.

[54]Department of Health and Aged Care, Submission 196, p. 6.

[55]Australia Long Covid Community Facebook Group, Submission 309, p. 9.

[56]Associate Professor Shidan Tosif, Consultant, General Medicine, and Clinical Lead, Post-COVID Clinic, The Royal Children's Hospital, Committee Hansard, Canberra, 12 October 2022, pages 8–9.

[57]Australian Academy of Science and the Australian Academy of Health and Medical Sciences, Submission165.1, p. 1.

[58]See, for example: Name withheld, Submission 3, p. 5; Name withheld, Submission 75, p. 4; Namewithheld, Submission 185, p. 7; Name withheld, Submission 190, p.3; Name withheld, Submission197, p. 1; Name withheld, Submission 311, p. 18; Name withheld, Submission 364, p. 1; Emma Quinn, Submission 397, p. 1; Name withheld, Submission 491, p. 6; Name withheld, Submission 533, p. 1.

[59]Royal Australian College of General Practitioners, Submission 168, p. 4.

[60]See, for example: Australian Name withheld, Submission 4, p. 7; Name withheld, Submission 120, p. 8; Physiotherapy Association, Submission 126, p. 10; Ms Jennifer Lang, Submission 144, p. 4; Ruth Newport, Submission 231, p. 9; The University of Melbourne - Faculty of Medicine, Dentistry and Health Sciences, Submission 237, pages 2-3, 7-8; Dr Anita White, Submission 238, p. 1; Dr Graeme Exelby, Submission 248, p. 3; Australian Traditional Medicine Society, Submission 271, p. 4; UNSW Fatigue Clinic and Research Program, Submission 289, p. 1; Dr Anne Fletcher and Dr Luke Fletcher, Submission 436, p. 13; Dr Jen Kok, Medical Virologist, Australian Society of Microbiology, Institute of Clinical Pathology and Medical Research, and NSW Health Pathology, Committee Hansard, Canberra, 17 February 2023, p. 42; Professor Jeremy Nicholson, Director, Australian National Phenome Centre, and Pro Vice-Chancellor Health Sciences, Murdoch University, Committee Hansard, Malvern, 20 February 2023, p. 32.

[61]University of New South Wales (UNSW) Fatigue Clinic and Research Program, Submission 289, p. 1, citations omitted.

[62]Ruth Newport, Submission 231, p. 9.

[63]Dr Anne Fletcher and Dr Luke Fletcher, Submission 436, p. 13.

[64]S Wulf Hanson et al., ‘A global systematic analysis of the occurrence, severity, and recovery pattern of long COVID in 2020 and 2021’, medRxivNote [Preprint], doi.org/10.1101/2022.05.26.22275532, viewed 6 March 2023. Note this research is pending peer review.

[65]Allied Health Professions Australia, Submission 269, p. 4.

[66]Department of Health and Aged Care, Submission 196, pages 7, 30. See also, Institute for Evidence-Based Healthcare, Submission 195, p. 3; National Health and Medical Research Council Centre of Excellence in Treatable Traits, Submission 202, pages 8–9; Name withheld, Submission 228, pages 1–2; Dr Anita White, Submission 238, p.1; John Curtin Research Centre, Submission 243, p. 4; Australian Patients Association, Submission 256, p. 3; Lung Foundation Australia, Submission 294, p. 11; Australia Long Covid Community Facebook Group, Submission 309.2, pages 1–6; Asthma Australia, Submission 339, p. 6; The George Institute for Global Health, Submission 514, p. 3.

[67]Asthma Australia, Submission 339, p. 6.

[68]Department of Health and Aged Care, Submission 196, p. 7. See also, Institute for Evidence-Based Healthcare, Submission 195, p. 14; Lung Foundation Australia, Submission 294 (Attachment 1), p. 6; Australasian College of Nutritional and Environmental Medicine, Submission 434, p. 7; Professor Catherine Bennett, Chair in Epidemiology, Deakin University, Committee Hansard, Canberra, 12 October 2022, p. 26; Professor Margaret Hellard, Deputy Director, Burnet Institute, Committee Hansard, Canberra, 12 October 2022, p.24; Dr Irani Thevarajan, Infectious Diseases Physician, Victorian Infectious Diseases Service, The Peter Doherty Institute for Infection and Immunity, Committee Hansard, Canberra, 12 October 2022, p. 14; Associate Professor Shidan Tosif, Consultant, General Medicine, and Clinical Lead, Post-COVID Clinic, TheRoyal Children’s Hospital, Committee Hansard, Canberra, 12 October 2022, p. 10.

[69]Royal Australian College of General Practitioners, Submission 168, p. 8. See also, Burnet Institute, Submission 149, p. 8.

[70]Professor Catherine Bennett, Chair in Epidemiology, Deakin University, Committee Hansard, Canberra, 12October 2022, p. 27.

[71]See, for example: Royal Australian College of General Practitioners, Submission 168, p. 8; Public Health Association of Australia, Submission 351, p. 6.

[72]Rural Doctors Association of Australia, Submission 362, p. 8, citations omitted.

[73]Dr Jason Agostino, Senior Medical Adviser, National Aboriginal Community Controlled Organisation, Committee Hansard, Canberra, 17 February 2023, p. 1.

[74]National Disability Services, Submission 460, p. 3.

[75]See, for example: Emerge Australia, Submission 67, p. 8; Dr Anne Fletcher and DrLukeFletcher, Submission 436, p. 18; Australian Psychological Society & Phoenix Australia Centre for Posttraumatic Mental Health Ltd, Submission 501, p. 6.

[76]See, for example: Name withheld, Submission 1, p. 4; Name withheld, Submission 4, p. 1; Name withheld, Submission 18, p. 1; Name withheld, Submission 50, p. 1; Miss Tara Barton, Submission 166, p. 10; Mrs Tori Haschka, Submission 177, p. 3; Name withheld, Submission 221, p. 4; Name withheld, Submission 228, p. 3; Name withheld, Submission 311, p. 28; Name withheld, Submission 312, p. 3; Name withheld, Submission326, p. 2; Natalia Hodgins, Submission 327, p. 1; Advocacy for Inclusion – Incorporating People with Disabilities ACT, Submission 336, p.4; Name withheld, Submission 358, p. 2; Australian Federation of Disability Organisations, Submission 486, p. 15; Name withheld, Submission 515, p. 1; Name withheld, Submission 522, p. 1.

[77]See, for example: Professor Martin Hensher, Submission 175 (Attachment 2), p. 22; Namewithheld, Submission 312, p. 2; Inner Melbourne Community Legal & Royal Melbourne Hospital (Allied Health Department), Submission 333, p. 5; AssociateProfessor Louis Irving, Respiratory Physician, Post-COVID Clinic, Royal Melbourne Hospital, Committee Hansard, Canberra, 12 October 2022, pages 1-2; Dr Tuan-Anh Nguyen, Head of Department, Senior Staff Specialist, Rehabilitation Medicine, Campbelltown Hospital, Committee Hansard, Canberra, 12 October 2022, p. 34; Dr Archana Sud, Infectious Diseases Physician and Clinical Director Medicine, Nepean and Blue Mountains Local Health District, Committee Hansard, Canberra, 12 October 2022, p. 6; Associate Professor AlexHolmes, Fellow, Royal Australian and New Zealand College of Psychiatrists, Royal Melbourne Hospital, and University of Melbourne, Committee Hansard, Canberra, 17February 2023, p. 57; Professor Brendan Murphy AC, Secretary, Department of Health and Aged Care, Committee Hansard, Canberra, 20 February 2023, p. 13.

[78]Associate Professor Louis Irving, Respiratory Physician, Post-COVID Clinic, Royal Melbourne Hospital, Committee Hansard, Canberra, 12 October 2023, pages 1-2.

[79]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 14, citations omitted.

[80]Professor Steven Faux and Associate Professor Anthony Byrne, Submission 544.1, pages 1–2.

[81]Professor Greg Dore, Professor and Epidemiologist, Kirby Institute, Committee Hansard, Canberra, 12October 2022, p. 37.

[82]See, for example: National Health and Medical Research Council Centre of Excellence in Treatable Traits, Submission 202, p. 9; Dr Graeme Exelby, Submission 248, p. 1; Australian Naturopathic Council, Submission 261, p. 2; Professor Raina Macintyre, Submission 300, p. 2; Advocacy for Inclusion – Incorporating People with Disabilities ACT, Submission 336, p.5; MSD Australia, Submission 452, p. 6.

[83]Dr Graeme Exelby, Submission 248, p. 1.

[84]See, for example: Name withheld, Submission 153, p. 2; Institute for Evidence-Based Healthcare, Submission 195, p. 3; Relationships Australia, Submission 245, p. 4; Name withheld, Submission 433, p. 1; Mrs Rebecca Adolph, Submission 462, p. 4; Name withheld, Submission 505, p. 2; Health Issues Centre, Submission 529, p. 9.

[85]Name withheld, Submission 153, p. 2.

[86]Rehabilitation Medicine Society of Australia and New Zealand, Submission 283, p. 8.