By Louise Prime.
Politicians, healthcare services, public health professionals, scientists, and society must collaborate to tackle long COVID so that the best possible outcomes can be achieved for everybody affected, doctors have demanded. They called for persisting symptoms of COVID-19 to be dealt with scientifically and without bias; for services to be both timely and tailored to individuals’ presentations; and for access to medical services or specific COVID-19 sick pay arrangements not to rely on positive test results in the context of a clinical diagnosis.
The 39 authors of the letter* in the BMJ are all affected by persisting symptoms of suspected or confirmed COVID-19, and said they wanted to share their insights from both personal experience of the illness and their perspective as physicians. They set out four principles that they said must underpin action to tackle the problem of long-COVID:
- Research and surveillance – COVID-19’s effects should be studied like those of any other disease. Persisting symptoms should be dealt with using a scientific methodology and without bias – paying thorough attention to epidemiology, pathophysiology, and management, to “capture the full spectrum of disease, including in those not admitted to hospital and not tested, to build an accurate picture of COVID-19 phenotypes”.
- Clinical services – services need to be timely, tailored to individuals’ presentations, and involve investigating and treating pathology, as well as the functional recovery of individuals. The authors warned that relying on “one-size-fits-all online rehabilitation services risks serious harm to patients” with undetected pathology, and that we should not assume that pathology is different between people admitted to hospital and those who were not – given that during the crisis many patients who might ordinarily have been admitted, instead “managed their extremely difficult symptoms at home”. They cited a recent warning that before patients are prescribed rehabilitation and exercise, they need a proper evaluation of their cardiac and respiratory function to ensure that it is safe for them; and they pointed out that the National Institute for Health and Care Excellence recently cautioned against graded exercise therapy in the context of COVID-19.
- Patient involvement – patients experiencing persisting symptoms of COVID-19 must be involved in the design of clinical research studies and the commissioning of clinical services because they have a great deal to contribute to the search for solutions.
- Access to services – clinical services commissioned should not unfairly discriminate against people with negative tests and a clinical diagnosis should be adequate for accessing any appropriate services. The authors noted that early in the pandemic widespread testing for active COVID-19 infection was unavailable, and was also “associated with a considerable risk of false negatives”; and that false negatives also seem common with antibody testing later in the disease course because some people do not seroconvert (even if they previously tested positive). So, they said: “Adherence to positive test results as a criterion for access to medical services or specific COVID-19 sick pay arrangements with employers is unacceptable in the context of a clinical diagnosis of COVID-19.”
They concluded: “We welcome increasing awareness of the problem of persisting symptoms of COVID-19. As politicians, scientists, and doctors attempt to tackle this issue, these principles can act as a guide enabling the experiences of those with the condition to inform the efforts of experts and lead to improved research and clinical care, benefiting those affected and society as a whole.”
* From doctors as patients: a manifesto for tackling persisting symptoms of covid-19. BMJ 2020; 370: m3565
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- Recovery progress after COVID infection in patients
- Proportion of patients still reporting longer-term symptoms
- An outline of the symptoms clinicians may be presented with
- The impact of disease severity on later outcomes
- The theories on the reasons for the observed continuing symptoms
- What investigations may be of help
- How to facilitate recovery for those patients
- Next steps in research