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    Clear diagnostic criteria facilitate care and legal recognition

    Long covid would be better understood as a potentially disabling condition if there were clinical diagnostic criteria to create meaningful pathways to care. This would benefit people with disabling symptoms in at least three ways. Firstly, those affected may need ongoing medical and allied care to retain or restore functions or to fulfil their life plans. Applications for state funded disability related health assistance usually require a clinical examination and sometimes a diagnostic code, such as an ICD-10 code. Diagnostic criteria for long covid may facilitate access to interventions and services that support social engagement and physical function (eg, hand rails, modified work environments, or access to rehabilitative therapy or psychiatric care).

    Clear diagnostic criteria—supported by ongoing research into the underlying mechanisms of persistent symptoms24 —might also reduce uncertainty and validate the experience of patients with long covid, including those who did not have access to testing at the time of presumed infection. A 2020 qualitative study in 24 patients with long covid identified uncertainty and being taken seriously as important concerns.25

    The third and potentially more profound implication of establishing diagnostic criteria for long covid is in legal recognition of disability through instruments such as the Americans with Disabilities Act in the US and the Equality Act 2010 in the UK. Because people with long covid may experience long term, substantial impairment of their ability or autonomy to participate in society, in principle these instruments may already cover long covid. For example, the Equality Act covers discrimination on the grounds of “protected characteristics,” one of which is disability, and can require employers and others to make “reasonable adjustments” for people with disabilities. However, the widely variable presentations of long covid and absence of definitive diagnostic criteria or biomarkers may make it harder for patients to prove that they qualify as disabled. The Americans with Disabilities Act Amendments Act also requires people to prove qualification before they can claim a right to accommodations.26 This means that the disability must be recognised by a court rather than relying on self-reported limitations in a person’s ability to undertake major life activities.

    Conversely, formally conceiving of long covid as a disability in law or policy is not the same as an individual determining whether their identity has changed to include “disabled.” This creates a tension between self-identification as disabled and the law, where it is often necessary to have clear definitions and boundaries. Excessive focus on biomarkers or black and white diagnostic criteria for long covid could inadvertently exclude people who experience debilitating symptoms that do not fit accepted definitions of disease.27 Disability is not merely a medical phenomenon but a social one, and a loss of social function should be included as part of an assessment of disability.

    Given the strong grassroots and patient led movement to recognise long covid, patients and advocacy groups should be included in developing disease criteria as a basis for self-identification.28 The successes of disability rights movements and other movements such as HIV/AIDS activism, in which self-advocacy formed the basis for change are instructive: nothing about us, without us.29 Establishing well defined criteria can empower people with long covid by providing a long term basis for coalitions and building communities. These can be leveraged into activism and political action to bring about social change, including by organising to motivate state responses to long covid.

    G Mohan.

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