The long COVID should make us rethink disability – and how we offer support to those with ‘invisible conditions’
Australia has only a handful of specialists familiar with managing what happens when the nervous system cannot properly regulate the body, as sometimes happens with long COVID. Whereas long COVID clinics are established, there are no publicly funded clinics for this type of nervous system dysfunction, and private waiting lists are now long.
From the outset, long-time COVID sufferers faced the same harm suffered by patients before them who sought help through Centrelink and the National Disability Insurance Scheme for the effects of post infection conditions.
Disability insurance plans around the world are governed by definitions and checklists that allow non-medical personnel to assess and approve applicants for assistance services. But those with an “invisible disease” rarely meet these criteria.
If we are to manage the tidal wave of deficiency and disability weighing on us, policy makers must heed the warnings that have been sounding for two years. We will have to rethink disability and support.
Read more: We need to prepare for a long COVID tsunami. But we don’t know exactly what is the best way to treat it
In November 2020, Data later published in The Lancet were presented to the Chinese Academy of Medical Sciences. The researchers warned of lingering symptoms after COVID, including fatigue, cognitive dysfunction, palpitations, chest pain, depression, insomnia and headaches.
The colloquial term “long COVID” was quickly coined. Different iterations of the name followed (including “COVID Long Hauls” in the United States). Many clinicians use the more scientific descriptor, “Post-acute sequelae of COVID-19”.
Long COVID is not a new phenomenon. Various post-infectious diseases have been documented in the medical literature for decades.
And these conditions bear a striking resemblance to each other. First, an individual is knowingly (or unknowingly) exposed to a pathogen (a virus, bacteria or other microorganism). Acute illness of varying degrees ensues before partial or complete recovery. But after “recovery” a wide range of symptoms appear. And these lead to functional decline. In other words, they prevent the affected person from doing daily activities that they would normally be able to do.
Two of these conditions, postural orthostatic tachycardia syndrome and myalgic encephalomyelitis or chronic fatigue syndrome, seem closely related. And their symptoms look a lot like long COVIDs too. Both seem to affect more women than men and additional immune issues are often present.
These similarities support the theory that these diseases result from an over-vigilant immune system. This creates an immune response that inadvertently damages the fragile autonomic nervous system (which regulates normal body functions like heart rate and blood pressure) while trying to rid the body of the invading pathogen.
However, there are a multitude of other theories and more investigation is needed.
An old stigma
The lack of understanding of these syndromes reflects the broad stigma attached to them – the idea that they are psychosomatic and involve mind and body.
The origin of these stigmata can be attributed to a publication series in the second half of the 20th century that dealt with disease outbreaks after exposure to unknown pathogens.
In 1970 the British Medical Journal published a article written by two psychiatrists who had reviewed case notes of 198 patients at the Royal Free Hospital in north London, where an outbreak of an unknown pathogen had occurred 15 years previously. The authors determined that the disease had no identifiable organic origin and was therefore likely to be caused by “epidemic hysteria”. This conclusion was partly justified by the high proportion of women among those infected with the disease, the authors said.
The publication of this theory in a preeminent scientific medical journal lent credence to what has become an enduring narrative. The result has been a chronic lack of interest and investment in these debilitating invisible diseases, which can render people unable to work or participate in society.
A matter of definition
The burden of these systemic failures now hangs heavily on a society facing a global tsunami of post-COVID conditions. And this partly explains the collective shrug of the shoulders of the health authorities when it comes to providing answers to the sick.
Estimates of the number of people infected with COVID who develop long COVID vary from 5 to 40%. The large variance is the result of the initial absence of a consistent or unifying set of diagnostic criteria.
Recently, the World Health Organization provided a definition post-COVID conditions. It includes people with a history of probable or confirmed infection with SARS-CoV-2 (the virus that causes COVID) who have persistent symptoms for more than two months, which are not explained by another diagnosis.
Defining the disease makes it possible to characterize more clearly who is affected. Long COVID is now known to affect any age group and can be unconnected to the initial severity of the infection. This evidence prompted the US Centers for Disease Control and Prevention to detail a ominous warning on post-COVID health issues that “can last for weeks, months, or years.”
Several case series and observational studies have now identified a high burden of nervous system dysfunction in patients with long-term COVID. Several studies, including one published in the Journal of the American College of Cardiology, demonstrated that up to 95% of patients with long COVID also meet international criteria for postural orthostatic tachycardia syndrome. This syndrome may cause dizziness, brain fog, fatigue, headache, blurred vision, palpitations, tremors and nausea.
These symptoms are often incompatible with performing normal daily tasks, which is why unemployment and disability are elevated in patients with postural orthostatic tachycardia syndrome, despite their young age.
Read more: Reinfection will be part of the pandemic for months to come. Every repeat illness increases the risk of prolonged COVID
The next wave
In March 2021, the American Autonomic Society published a statement warning of increasing patient presentations to free-standing specialist referral centers with symptoms of post-COVID postural orthostatic tachycardia syndrome. Of particular concern was the insufficient number of physicians familiar with this type of dysfunction to treat the disease.
This situation is found in Australia where only a handful of specialists are accustomed to handling such complex cases.
Contrary to popular medical opinion and widely held beliefs, effective therapies exist for underlying conditions such as postural orthostatic tachycardia syndrome, which is prevalent in long COVIDs. Early intervention is essential. Treatment should be fully explored and implemented before disability support services perhaps sought.
Read more: We’ve calculated the impact of ‘long COVID’ as Australia opens up. Even without Omicron, we are worried
time to listen
Our healthcare systems must absolve themselves of the sins of the past and heed the overwhelming voice of people currently suffering from long-lasting COVID and those with other post-infectious syndromes or invisible illnesses who have endured decades of medical neglect.
Treatment options must be made available and multidisciplinary teams must improve their skills to manage these conditions.
A redefinition of what it means to be disabled must be explored. Most importantly, these definitions should not be tied to a single cause but to the manifestation of symptoms that result in disability.
Read more: When is a condition “chronic” and when is it a “disability”? The definition can determine the support you get