Long covid and disability: a brave new world

Abstract

One billion people worldwide live with a disability, 1 but they are often overlooked in discussions of pandemic preparedness and response. 2 3 People with physical and cognitive disabilities-including those with "invisible" disabilities that are not obvious from the outside-were at disproportionate risk of harm from covid-19 because of their pre-existing medical conditions or their social circumstances. 4 -6 People in the UK people whose disabilities affected their day-to-day function were up to three times more likely to have died from covid-19. 7 They also experienced disproportionate loss of access to medical services, education, employment, and care. 8 The number of people experiencing disability is being swelled by people with "long covid," in which symptoms persist after the acute viral infection subsides. The term "long covid" was coined by patients, initially being used on social media to describe symptoms that were impairing quality of life. 9 We argue that this experience generates an obligation to recognise long covid as a potentially disabling condition defined by clinical diagnostic criteria and supported by ongoing clinical research. Such recognition would also re-enforce the obligation of the state to extend and expand supportive infrastructure and policy for people with other disabilities. The need for just social policies grounded in contemporary theories of disability, designed by disabled people for disabled people, can also form the basis for advocacy and policy change beyond the pandemic.

Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study

“…As evidence continues to emerge on the long-term outcomes and trajectory of Long COVID, and the underlying mechanistic causes of symptoms and disability,58 uncertainty with Long COVID will change. Clarity of diagnostic criteria can help to reduce medical uncertainty and validate experiences of persons living with Long COVID including those without formal testing at the time of COVID infection 32 77. In the meantime, under-recognition by healthcare providers (medical uncertainty) related to the treatment of Long COVID during transition from acute to chronic illness deserves more attention.…”

Conceptualising the Episodic Nature of Disability among Adults Living with Long COVID: A Qualitative Study

“…Clarity of diagnostic criteria can help to reduce uncertainty and validate experiences of persons living with Long COVID including those without formal testing at the time of COVID-19 infection. 56 In the meantime, uncertainty should be recognized as an integral component of disability experienced among individuals living with Long COVID so that healthcare providers can better understand and support those living with uncertainty in the context of chronic illness. This should be considered in the context of concurrent uncertainty experienced in the broader environment among caregivers, health providers, employers and insurers in the evolving field of Long COVID.…”

Effectiveness of a telerehabilitation intervention using Recovery APP of Long COVID patients: A randomized, three-month follow-up clinical trial

“…According to systematic reviews, some of the most prevalent symptoms are fatigue or extreme tiredness, dyspnoea, myalgia, arthralgia, headache, cough, alteration to smell and taste, brain fog, lack of attention and concentration, as well as there being effects on mental health, among others [7][8][9][10] . These prolonged symptoms are disabling and affect the patient's physical and mental health, altering their social, work, and family environment and their quality of life 11 .…”