Long COVID should make us rethink disability – and the way we offer support to those with 'invisible conditions'
From the outset, long-COVID sufferers faced the same prejudice experienced by patients before them
Disability insurance schemes worldwide are driven by definitions and checklists that allow non-medical workforces to assess and approve candidates for support services. But those with “invisible illness” rarely meet these criteria.
If we are to manage the tidal wave of impairment and disability bearing down on us, policymakers must heed the warnings that have been sounding for the past two years. We’ll need to rethink disability and support.
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À lire aussi : We need to brace for a tsunami of long COVID. But we're not quite sure the best way to treat it
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First warnings
In
The colloquial term “long COVID” was soon coined. Varying iterations of the name followed (including “COVID long haulers” in
Long COVID is not a new phenomenon. Various post-infection illnesses have been documented in medical literature for decades.
And such conditions bear a striking resemblance to each other. First, an individual is knowingly (or unknowingly) exposed to a pathogen (a virus, bacterium or other microorganism). An acute illness of varying degrees of severity ensues before a partial or complete recovery. But following “recovery”, a broad range of symptoms emerge. And these lead to functional decline. In other words, they stop the sufferer from doing the daily activities they would normally be able to do.
Two of these conditions, postural orthostatic tachycardia syndrome and myalgic encephalomyelitis or chronic fatigue syndrome, appear closely related. And their symptoms look a lot like long COVID too. Both seem to affect more women than men and additional immune problems are often present.
These similarities support the theory these illnesses result from a hyper-vigilant immune system. This creates an immune response that inadvertently causes damage to the fragile autonomic nervous system (which regulates the body’s normal functions like heart rate and blood pressure) while attempting to rid the body of the invading pathogen.
However, there are a plethora of other theories and more investigation is needed.
An old stigma
Lack of understanding about these syndromes is reflective of the broad stigmas attached to them – the idea they are psychosomatic and involve the mind and body.
The origin of these stigmas can be traced to a series of publications in the latter half of the 20th century that addressed outbreaks of illnesses after exposure to unknown pathogens.
In 1970, the
Publication of this theory in a preeminent scientific medical journal gave credence to what became an enduring narrative. The result has been a chronic lack of interest and investment in these debilitating invisible illnesses, which can render people unable to work or participate in society.
A question of definition
The burden of these systemic failings now weighs heavy on a society faced with a worldwide tsunami of post-COVID conditions. And it goes some way to explaining the collective shrugging of shoulders by health authorities when it comes to providing answers for sufferers.
Estimates of how many people infected with COVID go on to develop long COVID vary from 5–40%. The large variance is a result of the initial absence of a consistent or unifying set of diagnostic criteria.
Recently the
Defining the illness allows clearer characterisation of
Multiple case series and observational studies have now identified a high burden of nervous system dysfunction in long COVID patients. Several studies, including one published in the
These symptoms often are often incompatible with carrying out normal daily tasks, which explains why unemployment and disability are high among postural orthostatic tachycardia syndrome patients, despite their young age.
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À lire aussi : Reinfection will be part of the pandemic for months to come. Each repeat illness raises the risk of long COVID
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The next wave
Back in
This situation is mirrored in
Contrary to popular medical opinion and widely held beliefs, effective therapies exist for underlying conditions like postural orthostatic tachycardia syndrome, which is prevalent in long COVID. Early intervention is key. Treatment needs to be fully explored and implemented before disability support services can be sought.
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À lire aussi : We calculated the impact of 'long COVID' as
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Time to listen
Our health systems need to absolve themselves of past sins and pay attention to the overwhelming voice of the current sufferers of long COVID and those with other post-infection syndromes or invisible illnesses
Treatment options need to be made available and multidisciplinary teams need to upskill to manage these conditions.
A redefining of what it is to be disabled needs to be explored. Most importantly, these definitions should not be tied to a single cause but to the manifestation of symptoms that culminate in the disability.
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À lire aussi : When is a condition 'chronic' and when is it a 'disability'? The definition can determine the support you get
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