Authors' note: This text was initially written in November 2021 as a perspective article. However, we never got around to publishing it. Considering the recent announcement by the WHO on ending COVID-19 as a global health emergency, we have chosen to add some references and publish it as a blog post. The goal is to raise awareness that even in 2023, there are still basic things to be done, such as calling things by their name.

José B. Negrón (Public health researcher and health psychologist)

https://orcid.org/0000-0003-4659-5508 

Mary J. Rodríguez-Malavé (Internal medicine physician and public health researcher)

Instituto de Investigación Social y Sanitaria, Puerto Rico

                       

José B. Negrón (Twitter: @negronjb)

The growing scientific evidence has shown that Coronavirus Disease 2019 (COVID-19) can cause persistent illness or long-term sequelae in people who have previously had the disease (1, 2, 3). The most recent evidence shows that these sequelae are systemic and not limited to the respiratory system (4). Moreover, one study has reported an association with alterations in various inflammatory markers (5). Research initiatives have been emerging, especially in Europe, offering an opportunity to improve our understanding of this condition (6).

 

On October 6, 2021, the World Health Organization (WHO) published the document titled "A clinical case definition of post COVID-19 condition by a Delphi consensus" in an international effort to standardize a clinical case definition for this condition (7). A separate clinical case definition for children and adolescents was formed on February 16, 2023 (8). The WHO has pointed out that the absence of a clinical case definition and a single terminology are drawbacks to advancing research and management. However, their work only addressed the clinical case definition, leaving the absence of a single terminology as an ongoing issue. Various terminologies from different sectors have been proposed. Some of them in the English language are Long Covid, Long-Haul COVID, and the one created by the WHO in September 2020, post COVID-19 condition. Similarly, a variety of terms have been created in the Spanish language, such as COVID Persistente, COVID de larga duración, and COVID prolongado. However, not having a single term to refer to this disease is confusing for anyone who wants to read, learn, and communicate about it, from patients, researchers, reporters, and even the general population. Nevertheless, we should be aware of the history and origin of the term Long Covid. Long Covid is a sophisticated patient-made term that was generated in May 2020 on Twitter, a microblogging social media (SoMe) platform that focuses on short updates that are released publicly (9). The term was documented by the incorporation of the hashtag—a word or phrase preceded by a hash sign (#), used to identify messages on a specific topic—#LongCovid and #COVIDPersistente (in Spanish). To date, #LongCovid and #COVIDPersistente have collected the experiences of numerous people around the world with sequelae after they have had the SARS-CoV-2 infection.

 

People with the disease were the first to recognize that something more was happening and made a wake-up call to the scientific community and the general population. These organized efforts led the Spanish-speaking community to create the first Clinical Guideline for Long Covid (10). Despite the accomplishments achieved, there is still debate, mostly by people without the disease, as to which term should be officially adopted. Prior research has shown that crucial contributions might be lost when made by patients, whose expertise is less frequently validated (11). It is urgent that we, as a scientific community, begin to recognize that there are two sources of disease knowledge and, therefore, two different approaches to understanding this condition: technical knowledge and experiential knowledge (12). Technical knowledge is attributed to physicians or researchers and will depend on the quantity and quality of technical resources learned over time. Technical resources can be formative years, clinical experience, among others. Instead, experiential knowledge is attributed to people with a disease and will depend on the quantity and quality of experiential resources acquired over time, such as coping, social support network, learning by trial and error, among others.

As healthcare professionals, our mission in this pandemic is to generate knowledge and value and this begins by consciously listening to people with the disease and respecting their knowledge. Patient-centeredness is at the heart of many modern healthcare systems and discourtesy cannot be the basis on which a healing relationship is built. Although agreeing on a single terminology may seem trivial, it is not. Calling this disease by its original name is the only way to close the gaps on confusing terms, in order to be able to offer kind and compassionate care for all. As other researchers have pointed out, language both reflects and shapes our thinking and thus, our behavior (13). Language is important but the people behind it matter most (14). This is not about consensus, but rather an effort to commitment; to those who speak, to validate their experiences, and to promote share decision making to find better outcomes.


REFERENCES

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2.         Spiers N. Recognising and bearing the burden of long COVID-related disability. British Journal of General Practice. 2022;72(715):70-.

3.         Tran V-T, Porcher R, Pane I, Ravaud P. Course of post COVID-19 disease symptoms over time in the ComPaRe long COVID prospective e-cohort. Nature Communications. 2022;13(1):1812.

4.         Davis HE, McCorkell L, Vogel JM, Topol EJ. Long COVID: major findings, mechanisms and recommendations. Nature Reviews Microbiology. 2023:1-14.

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6.         Rajan S, Khunti K, Alwan N, Steves C, MacDermott N, Morsella A, et al. In the wake of the pandemic. Preparing for Long COVID Policy Brief. 2021;39.

7.         Organization WH. A clinical case definition of post COVID-19 condition by a Delphi consensus. World Health Organization; 2021 October 6.

8.         Organization WH. A clinical case definition for post COVID-19 condition in children and adolescents by expert consensus. 2023.

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10.       Sociedad Española de Médicos Generales y de Familia, Spain LACT. Guía Clinica para la Atención al Paciente Long Covid / COVID Persistente. 2021 May 1.

11.       Sanderson T, Angouri J. 'I'm an expert in me and I know what I can cope with': Patient expertise in rheumatoid arthritis. Communication & medicine. 2013;10(3):249.

12.       Acebes C, Andreu JL, Balsa A, Batlle E, de Toro-Santos J, García Llorente F. Exploring the remission concept in rheumatoid arthritis with patients and rheumatologists: time for a new approach. Clin Exp Rheumatol. 2017;35(5):816-22.

13.       Cayton H. The alienating language of health care. SAGE Publications Sage UK: London, England; 2006.

14.       Galasínski D. 2022. [cited 2022]. Available from: https://dariuszgalasinski.com/2022/05/10/what-you-say-matters/.