Why we must keep using the term 'long COVID'

Our understanding of long COVID is still evolving and incomplete, but the future looks brighter as we move beyond “what is it?” to “what can we do about it?”

The first International Long COVID Awareness Day on 15 March prompted many of us to reflect on progress made in our understanding of this syndrome. It is almost four years since the condition known as post‐coronavirus disease 2019 (COVID‐19) condition or long COVID was first identified by consumers, and we are constantly discovering more about its symptoms and impact on daily life. However, progress in understanding and treatment remains frustratingly slow for patients and clinicians alike.

Recent comments by Dr John Gerrard highlight how the science of long COVID is far from settled. He urged Australians to “stop using the term long COVID” because “it wrongly implies there is something unique, exceptional and somewhat sinister (about it) … we’ve seen very similar effects from other [viruses]”. Long COVID shares many features with known post-viral syndromes and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), meaning research and treatment developed for these conditions may benefit multiple patient groups. However, evidence is mounting that long COVID also has unique features, such as a distinctive immune profile and a higher prevalence of symptoms including smell and taste dysfunction, rash, and hair loss. Pinpointing where long COVID fits in the landscape of post-viral syndromes remains a work in progress, but a surge of recent and upcoming research is starting to chart previously unexplored areas on the map.

The current long COVID landscape

We now know many patients with long COVID experience persistent organ damage and inflammation, along with mental health and sleep disorders. In addition to the well known symptom “brain fog”, they can have a diverse range of cognitive deficits that have a huge impact on daily life. Ongoing concerns about viral persistence has led the National Health Service in the United Kingdom to ban people with long COVID from giving blood until they are symptom-free for at least six months. The sheer volume of emerging research in this field makes it impossible to any one person to keep on top of, but LitCovid is helpful for finding the most relevant and up-to-date evidence for patients.

The promise of future innovative treatments are little comfort to the many Australians currently living with long COVID. Thankfully, more opportunities for therapy and rehabilitation are now available as we move beyond “what is it?” to “what can we do about it?”. Epworth Healthcare in Melbourne originally developed its olfactory impairment clinic for other patient groups, but now extends its services to long COVID. Smell and taste dysfunction from COVID-19 can resolve slowly, but has a big impact on quality of life and patient safety. These symptoms can be effectively managed via specialist assessment, pharmaceutical treatments, olfactory training, and onward referral.

Although physiotherapy and psychology have established roles in long COVID management, there is growing awareness of the potential contribution of other allied health professions. Patients value occupational therapy for its ability to improve their participation in daily life, and many who experience significant language and communication problems benefit from speech pathology. Dietitians can provide guidance on evidence-based anti-inflammatory diets, and audiologists can support patients to manage the common and distressing symptom of tinnitus. We are yet to fully realise the long-called for multidisciplinary approach to long COVID, but we are moving in the right direction.

Importantly, we now have a clear “no go” area on the map. Graded exercise therapy should not be prescribed to patients with long COVID experiencing post-exertional symptom exacerbation (PESE, also known as post-exertional malaise). PESE is not the same as fatigue; it is characterised by muscular pain and weakness on top of general physical and cognitive exhaustion. There is an established risk of eliciting or exacerbating PESE from graded exercise therapy and all patients with long COVID should be screened using a validated tool such as the DePaul Symptom Questionnaire before commencement. Cognitive behavioural therapy may also be considered for patients with long COVID as an adjunctive therapy, but it is important to note there is no evidence it has any curative effect on other post-viral syndromes.

So, where to from here?

The federal government response to their long COVID inquiry has acknowledged and provided in-principle support for most recommendations. The emphasis on greater collaboration is a welcome recognition of long COVID’s impact on the Australian community. However, the recommendation to drop “long COVID” in preference to post-acute sequelae of COVID-19 (PASC) is problematic and distressing for the long COVID consumer community. This recommendation underestimates the colloquial use and deeper meaning of the term “long COVID”. In my opinion, we have no right to tell patients how they name or speak about the syndrome they identified. It is important we continue to use “long COVID” when communicating with patients, to acknowledge and respect their advocacy and hard-won lived experience.

We also need to engage in genuine inclusion of consumers in the development and delivery of health care. Good intentions and motherhood statements are not enough. The coproduction of public health advice, antistigma and antidiscrimination strategies, and care pathways is urgently needed at the system level. We should consider partnering with patient advisory groups and providing patient led or cofacilitated continuing professional development at the grassroots level. Doctors have a loud and powerful voice in Australian health care and are well placed to collaboratively advocate with people with long COVID.

The federal government response also acknowledges the crucial role of primary care in long COVID management but makes no commitment to additional resourcing. In the words of tennis great Arthur Ashe, we must start where we are, use what we have, and do what we can. Although curative and pharmaceutical areas of the map remain blank, evidence-based therapy and rehabilitation to enable patients with long COVID to self-manage and recover is already accessible through multidisciplinary teams. As the co-designed Discovery model of long COVID shows, we can make better use of existing face-to-face and telehealth resources to give our patients the care they need.

Our map may be incomplete four years into the COVID-19 pandemic, but we have enough direction to provide quality care and the future is brighter.

Associate Professor Danielle Hitch is an occupational therapist at the School of Health and Social Development and Institute for Health Transformation at Deakin University in Geelong and Western Health in Melbourne.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

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