Introduction by Croakey: On 15 March, the second annual International Long COVID Awareness Day was held, with messages urging the global community to “confront long COVID”, and a series of activities to highlight the importance of better prevention, treatment and support.
The rationale for the day is underscored by evidence from people with long COVID given to an Australian Parliamentary inquiry, who often feel their condition is not believed or taken seriously, frequently leading to delays in diagnosis and inadequate care and support.
On 14 March, the European Society of Clinical Microbiology and Infectious Diseases (ESCMID) issued a statement via Eureka Alert, with the headline, ‘Long COVID ‘indistinguishable’ from other post-viral syndromes a year after infection’.
The statement was clearly aimed at promoting the European Congress of Clinical Microbiology and Infectious Diseases, to be held in Barcelona from 27-30 April, and included this message to journalists: “please credit the congress if you use this story”.
The statement quoted Queensland Health research, and cited Queensland’s Chief Health Officer Dr John Gerrard saying it is time to stop using terms like ‘long COVID’ because this “terminology can cause unnecessary fear, and in some cases, hypervigilance to longer symptoms that can impede recovery”.
The statement acknowledged several limitations with the study, which was based on a survey delivered by SMS link to people who had a PCR test for COVID a year previously (also see this commentary by Nobel Laureate Professor Peter Doherty and others).
The statement was widely picked up by media, generating headlines such as: Time to stop using term ‘long Covid’ as symptoms no worse than those after flu, Queensland’s chief health officer says (The Guardian); ‘Long COVID’ doesn’t exist as we know it, according to new research (The Sydney Morning Herald); Time to stop using ‘long COVID’ – Qld health chief (The Canberra Times); Queensland’s Chief Health Officer says it’s time to stop using the term ‘long COVID’ (ABC News); and ‘Long Covid’ should be scrapped over fears its ‘probably harmful’: QLD chief health officer (News.com).
Some articles included comments from other experts questioning the study’s methodology and the conclusions promoted by Gerrard; however, most did not frame these preliminary findings within the wider body of knowledge about long COVID.
While there are of course many questions and uncertainties about the prevalence and nature of long COVID, questions can rightly be raised about journalistic and newsroom practices in the wake of such reporting, as well as the insensitive and opportunistic timing of the statement’s release by the ESCMID.
In the article below, first published at The Conversation under the headline, ‘Why scrapping the term ‘long COVID’ would be harmful for people with the condition’, Professor Deborah Lupton explores the issues at stake for people with long COVID.
Deborah Lupton writes:
The assertion from Queensland’s Chief Dealth Officer Dr John Gerrard that it’s time to stop using the term “long COVID” has made waves in Australian and international media over recent days.
Gerrard’s comments were related to new research from his team finding long-term symptoms of COVID are similar to the ongoing symptoms following other viral infections.
But there are limitations in this research, and problems with Gerrard’s argument we should drop the term “long COVID”.
Here’s why.
A bit about the research
The study involved texting a survey to 5,112 Queensland adults who had experienced respiratory symptoms and had sought a PCR test in 2022. Respondents were contacted 12 months after the PCR test. Some had tested positive to COVID, while others had tested positive to influenza or had not tested positive to either disease.
Survey respondents were asked if they had experienced ongoing symptoms or any functional impairment over the previous year.
The study found people with respiratory symptoms can suffer long-term symptoms and impairment, regardless of whether they had COVID, influenza or another respiratory disease. These symptoms are often referred to as “post-viral”, as they linger after a viral infection.
Gerrard’s research will be presented in April at the European Congress of Clinical Microbiology and Infectious Diseases. It hasn’t been published in a peer-reviewed journal.
After the research was publicised last Friday, some experts highlighted flaws in the study design. For example, Dr Steven Faux, a long COVID clinician interviewed on ABC’s television news, said the study excluded people who were hospitalised with COVID (therefore leaving out people who had the most severe symptoms). He also noted differing levels of vaccination against COVID and influenza may have influenced the findings.
In addition, Faux pointed out the survey would have excluded many older people who may not use smartphones.
The authors of the research have acknowledged some of these and other limitations in their study.
Ditching the term ‘long COVID’
Based on the research findings, Gerrard said in a press release:
We believe it is time to stop using terms like ‘long COVID’. They wrongly imply there is something unique and exceptional about longer term symptoms associated with this virus. This terminology can cause unnecessary fear, and in some cases, hypervigilance to longer symptoms that can impede recovery.”
But Gerrard and his team’s findings cannot substantiate these assertions. Their survey only documented symptoms and impairment after respiratory infections. It didn’t ask people how fearful they were, or whether a term such as long COVID made them especially vigilant, for example.
In discussing Gerrard’s conclusions about the terminology, Faux noted that even if only three percent of people develop long COVID (the survey found three percent of people had functional limitations after a year), this would equate to some 150,000 Queenslanders with the condition. He said:
To suggest that by not calling it long COVID you would be […] somehow helping those people not to focus on their symptoms is a curious conclusion from that study.”
Another clinician and researcher, Associate Professor Philip Britton, criticised Gerrard’s conclusion about the language as “overstated and potentially unhelpful”. He noted the term “long COVID” is recognised by the World Health Organization as a valid description of the condition.
A cruel irony
An ever-growing body of research continues to show how COVID can cause harm to the body across organ systems and cells.
We know from the experiences shared by people with long COVID that the condition can be highly disabling, preventing them from engaging in study or paid work. It can also harm relationships with their friends, family members, and even their partners.
Despite all this, people with long COVID have often felt gaslit and unheard. When seeking treatment from health-care professionals, many people with long COVID report they have been dismissed or turned away.
Last Friday – the day Gerrard’s comments were made public – was actually International Long COVID Awareness Day, organised by activists to draw attention to the condition.
The response from people with long COVID was immediate. They shared their anger on social media about Gerrard’s comments, especially their timing, on a day designed to generate greater recognition for their illness.
Since the start of the COVID pandemic, patient communities have fought for recognition of the long-term symptoms many people faced.
The term “long COVID” was in fact coined by people suffering persistent symptoms after a COVID infection, who were seeking words to describe what they were going through.
The role people with long COVID have played in defining their condition and bringing medical and public attention to it demonstrates the possibilities of patient-led expertise.
For decades, people with invisible or “silent” conditions such as ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have had to fight ignorance from healthcare professionals and stigma from others in their lives. They have often been told their disabling symptoms are psychosomatic.
Gerrard’s comments, and the media’s amplification of them, repudiates the term “long COVID” that community members have chosen to give their condition an identity and support each other. This is likely to cause distress and exacerbate feelings of abandonment.
Terminology matters
The words we use to describe illnesses and conditions are incredibly powerful.
Naming a new condition is a step towards better recognition of people’s suffering, and hopefully, better diagnosis, health care, treatment and acceptance by others.
The term “long COVID” provides an easily understandable label to convey patients’ experiences to others. It is well known to the public. It has been routinely used in news media reporting and and in many reputable medical journal articles.
Most importantly, scrapping the label would further marginalise a large group of people with a chronic illness who have often been left to struggle behind closed doors.
Author details
Professor Deborah Lupton is SHARP Professor, Vitalities Lab, Centre for Social Research in Health and Social Policy Centre, and the ARC Centre of Excellence for Automated Decision-Making and Society, UNSW Sydney. She is a sociologist with a Master of Public Health and a doctorate in the sociology of public health. Deborah blogs on sociological issues at ‘This Sociological Life’ and tweets @DALupton. She is an elected Fellow of the Academy of Social Sciences in Australia and the Royal Society of New South Wales. She is affiliated with OzSAGE.
See Croakey’s archive of articles on long COVID
