Nature editorial: How to define the persistent symptoms of the new crown? The patient’s perspective should be included.

On October 7th, the international authoritative academic journal Nature published an editorial describing the term protracted symptoms of the new crown and the definition of recovery, which must be incorporated into the patient’s perspective. Some new corona patients still have symptoms such as breathing difficulties and fatigue a few months after the onset of the disease and long after they are announced for rehabilitation. Researchers and clinicians have yet to agree on the names of these persistent symptoms. The literature description of these symptoms includes post-COVID syndrome and chronic COVID-19.

Now, researchers, patient groups, and people affected by the condition are urging the use of “long COVID.”

Nature editorial: How to define the persistent symptoms of the new crown? The patient's perspective should be included.

They also called attention to the definition recovered from COVID-19, which is based on criteria that are not limited to whether a patient’s nucleic acid test is negative. Nisreen Alwan, a public health researcher at the University of Southampton in the UK, wrote in August that patients’ symptoms, such as chest tightness, breathing difficulties, muscle pain, palpitations and fatigue, should also be taken into account.

The World Health Organization is closely following developments on this issue. Researchers and institutions must also consider more urgently the definition of COVID rehabilitation and the use of the term “long COVID”. The patient’s voice must also be placed at the center when defining.

When deciding how to define “long COVID,” researchers and decision makers must be aware of myalgia encephalopathy, or chronic fatigue syndrome (ME/CFS). This condition is the same as some of the symptoms of “long COVID”, in which patients often struggle for many years before being identified as having severe, debilitating ME/CFS that requires specialized treatment and research.

About 40 years ago, people began reporting chronic fatigue syndrome, a disease that had never been seen before. Symptoms include fatigue, insomnia and recurrent pain. However, in the early years, these reports were rarely considered by the agencies. Attention requires sustained support from patient organizations. They must organize their own independent scientific advice to convince research funders to listen to patients. Although COVID is well known, “long COVID” is not, at least not yet. It is important that people listen to those with chronic fatigue syndrome. Unfortunately, the voices of those with chronic fatigue syndrome were not heard.

The difficulties faced by people with chronic fatigue syndrome are partly due to the marginalization of their voices. In addition, the name chronic fatigue syndrome suggests that one of the main symptoms is fatigue, when people experience more painful and complex experiences. They usually include recurrent pain, which often fluctuates in severity, inability to fall asleep, inattmental concentration, and exhaustion even after relatively mild physical activity.

Felicity Callard, an anthropologist at the University of Glasgow in the UK, has also studied “long COVID”. The key, Carrard says, is to agree on the appropriate term “long COVID.” Last week a group of researchers who had experienced “long COVID” themselves wrote a blog post for the British Medical Journal urging academics and the medical community to start using the word “long COVID”. The authors argue that the use of words such as “post”, “syndrome” and “chronic” risks delepriation of pain compared to “long COVID”, which will make it more difficult for patients to access care.

Terms such as “post,” “syndrome” and “chronic” also contain basic physiological assumptions about the disease that have not been properly studied, Mr Carrard said. In contrast, “long COVID” clearly states that people experience the disease for a long time after infection, but it does not assume knowing anything else.

In an editorial, Nature said the WHO appeared to be listening. “We have received your distress signal,” WHO Director-General Tan Desser told a meeting of the COVID patient group in August. We have clearly heard that ‘long COVID’ needs identification, guidance, research and ongoing patient information and narratives to help WHO respond. “

Public health authorities have also taken note, and some people have begun to use the word “long COVID”. Researchers, clinicians, and funders must also consider how they will refer to the disease and how to more accurately define the rehabilitation of COVID-19.

Finally, the Nature editorial says it is important to always take into account the voices of new crown patients and their representatives, who have done a great deal to integrate “long COVID” into the health research and policy agenda.