EXPERT REACTION: Long COVID Inquiry report

The committee has acknowledged the difficulties so many people have had in getting assistance for long-covid. However the report could be stronger in actions to take now rather than calling for more reviews (for example of the Medicare chronic disease management plans), more research (to be conducted by the proposed Centre for Disease in Control in Australia, which is not yet established) and a national plan (as announced by Minister Butler today.  These are all important but won’t deliver for people experiencing long covid for another year or so.

The report of the parliamentary inquiry into Long COVID and repeated COVID-19 infections has provided a key and much-needed set of nine recommendations to government and has highlighted the information gaps to be filled in order to meet the needs of long COVID sufferers, communities, health care providers, epidemiologists, public health practitioners, governments, and health planners.

These include but are not limited to:

• A single entity (eg an Australian CDC [Centers for Disease Control in the USA]) that documents continually the extent of long COVID and its impacts in Australian communities and different risk groups – based on a (not currently) standardised and 'living' definition of long COVID
• Developing and funding a nationally co-ordinated, comprehensive research progam ranging from basic research through to preventive and treatment strategies and support programs
• Designing a health system that provides clear and innovative care pathways, including a stratified system of self-assessment, telehealth, primary care (e.g. GPs, pharmacy and allied health) and specialist referrals (with some hospital-based clinics) – taking into account constraints in rural and regional communities, and issues specific to our Indigenous peoples and to culturally and linguistically diverse communities

If the recommendations are implemented in full, Australia will be at the forefront of a best practice, person-centred, clinical and psychological care and social support system for sufferers of long COVID - underpinned and validated by responsive and strategic world-class multidisciplinary research.

Long COVID is a post-viral fatigue syndrome, which has been recognised for many years as a human health challenge, often as a diagnosis of ME/CFS [myalgic encephalomyelitis / chronic fatigue syndrome]. As an active researcher of post-viral fatigue - ME/CFS, I welcome the parliamentary committee's findings on long COVID and particularly the conclusion that pre-COVID ME/CFS patients will be recognised under the Committee's recommendations.

The broad-ranging inquiry and report into Long COVID gives a substantial account of the state of play of Long COVID population data and current strategies in Australia and makes a number of recommendations for future actions. The committee should be congratulated on collecting and presenting such a complex subject in an accessible way.

The main medical focus is on major persistent symptoms, definitions and sub-classifications of the disease that require diverse assessment and long-term mitigation plans. There is a most important conclusion that the Long COVID 'population experience' would be best managed by the creation of a new Australian Centre for Disease Control to help the collection and coordination of patient data at a national level and the formulation of a plan for funding for trials and studies relating to long COVID for the nation.
 
Currently, trials and most research are scattered, statistically underpowered (too many small studies) and not connected either between states or even within them. Obviously, the development of a CDC is going to take some time, but this would be an important development for Australia for future major disease monitoring and management. COVID-19 has not finished with us yet and there will be other emergent zoonotic diseases to challenge us in the future.
 
The report states that there are 200 diverse and non-specific symptoms for Long COVID – this clearly creates a challenge for the classification, diagnosis and stratification of the disease as well as its treatment. If there is a weakness in the report, it is in relation to the emphasis on symptomatic manifestations of Long COVID, rather than creating a pathway to the objective molecular classification of the disease using validated digital metrics which are now available. Obviously, symptomatic treatment is what the patients actually require but that needs mechanistic and biomarker knowledge and the interventions need to be focussed on the underlying chemical and metabolic abnormalities that are caused by the disease.
 
Many of the Long COVID complications are due to the triggering of multiple inflammatory conditions or the acceleration of pre-existing conditions, including heart disease, diabetes and neurological disorders, for each of which there are numerous existing treatments. So there needs to be more emphasis on advancing chemical diagnostics for Long COVID (blood and urine tests) for assessing individual patient problems and then applying those at population scale.
 
There is also a real issue about the increased disease risks for multiple conditions that have been accelerated by COVID-19 but are not necessarily symptomatic. These include new onset atherosclerosis, diabetes and neurological problems that are now well-established as long-term effects of SARS CoV-2 infections and are affecting millions of people around the world.  The report also mentions new outreach funding for improved healthcare access to Long COVID patients in remote regions and the needs of affected First Nations people. This is also laudable, but will require further future development of ruggedised diagnostics that can be applied away from high-technology medical centres, which in itself is a major task.
 
The announcement this morning of a further $50 million to support long COVID research and related programs is of course very welcome, but falls short of the current and future research needs across such a broad swathe of medicine. It is also a small sum in relation to the healthcare burden imposed by COVID-19 and Long COVID that is even now starting to have effects. So let us hope that the new $50 million represents a first step towards investigating and ultimately mitigating Long COVD which is one of the great healthcare challenges of our time.

The Federal government has responded appropriately to scientific advice and the community voice in presenting a national approach, comprehensive strategy, and necessary funding support, for efforts to address the ongoing complications of COVID-19 and readiness for the next pandemic. As COVID-19 is now endemic in the community and those most vulnerable are at high risk of developing a serious infection, regular and up-to-date vaccination is our key defence mechanism, complemented by appropriate use of antiviral medications.

Research into long COVID is now a high priority to provide: (i) health professionals with tools for making a firm diagnosis, such as a simple laboratory marker of inflammation; (ii) data collection systems to monitor the health, social and economic impact; (iii) a better understanding of the mechanisms of illness; and (iv) coordinated and responsive systems of care within the primary care setting.

In infectious diseases we initially - for good reason - focus on the acute phase, but the chronic post-infection impacts of many diseases can be highly significant and persist long after this acute phase has gone. We saw this in recent Ebola, SARS and Chikungunya outbreaks but for some reason, a lot of people had difficulty accepting this common post-viral phenomenon would also occur in COVID too. Long term sequelae are not only incredibly complex and highly individualised, but also require equally complex and individualised approaches that health systems are rarely set up to do well. The impact of long COVID not only necessitates a new way of thinking about addressing this emerging health priority, but also provides an opportunity to think about what other long term syndromes have been largely overlooked, and how we might be able to work with people with these neglected symptoms better.

We welcome the Committee’s recommendation to establish a coordinated research program into long COVID. There is a pressing need to fully understand the impacts of this condition on the brain; we have concerns around the neurological symptoms being presented, including loss of smell and memory complaints.

Approximately 80% of those infected with COVID-19 report neurological dysfunction, and 30% have persistent symptoms. The long-term implications of these neurological symptoms require careful consideration as many of them are known to be associated with increased risk of neurodegeneration or recognised as part of the early symptoms for disorders such as Parkinson’s disease and Alzheimer’s disease.