Misinformation is rife. For example, social media is packed with people who believe the COVID-19 vaccines, and not the freely circulating virus, are responsible for the continued excess deaths being seen around the world1

The John Snow Project supports the work of public health agencies, and some of them have given good and clear advice on COVID-19 and Long Covid2-5. Sometimes, however, even public health agencies can get things wrong, and this document from Queensland Health is a prime example6

Updated on 5th October, the Queensland Health “Long COVID” Living Evidence Summary concludes by saying, “Many studies are poorly designed and overestimate the threat of Long COVID, as shown in this review. Exposure to negative messaging around Long COVID and “worst case” scenarios that are portrayed across the media have been acknowledged as a health risk.”

This statement and others made in the document articulate the idea of a ‘nocebo effect’ or a contagion of panic as the primary cause of Long COVID, and this harmful notion is at odds with the growing body of evidence that shows Long COVID is common and has clear biomarkers and clinical symptoms that make it very real indeed. By suggesting the condition is in people’s minds as a consequence of media-induced panic, Queensland Health is engaging in the worst kind of denialism. Denialism that can impact the quality of care received by patients suffering from this very real condition.

Correcting misinformation on social media is a difficult and time-consuming process, but thankfully most developed democracies have processes to safeguard their citizens against official abuses of power. Using Queensland Health as an example, when you come across misinformation from an official source, consider the following:

Freedom of Information

Write a letter under your local freedom of information laws, requesting details of the decision making process and the underlying data or information used to create the relevant statement or document.

Write a Complaint

Complain to the official agency publishing the misinformation, giving reasons why you believe they have published misinformation and citing your evidence. Like Queensland Health, which provides details of where to send complaints, most public agencies give details of how to complain. 

Write to Your Representative

Write to your member of parliament or representative to raise the issue with them. In the specific case of Long COVID, please don’t assume your letter will be ignored. Many people - including a lot of politicians - now know someone with a health complication following COVID-19 infection. The US Department of Health and Human Services recently established a special advisory committee on Long COVID7 to address the ongoing challenges posed by the condition, and the European Commission is working to address the challenge of Long COVID through the EU Health Policy Platform8.  

At a recent Employment, Social Policy, Health and Consumer Affairs Council meeting, EU Commissioner Stella Kyriakides said, “The long-term consequences of a COVID-19 infection are still very real for too many people. The WHO estimates that 36 million people across the European Region may have been affected by Long COVID - and this number continues to increase. One in eight people experience symptoms that last longer than expected after having had COVID.8

The reality and scale of the growing problem is such that many politicians have started to take notice and they know it is not caused by media-induced panic, so do reach out to your representatives and ask them to look into cases of misinformation published by officials.

Complain to the Ombudsman

Most government agencies are overseen by at least one ombudsman. In the case of Queensland Health, its activities are overseen by three agencies:

  • Queensland Ombudsman, which investigates complaints about the decisions or actions of a Queensland Government agency

Publishing such clear misinformation about Long COVID could arguably be an issue for all three ombudsmen. If official decisions are made on the basis of the misguided belief Long COVID is largely psychosomatic or panic-induced, policy might be wrong, which would be a governance issue for the Queensland Ombudsman. The Office of Health Ombudsman clearly has grounds to review health policy, and the Queensland Human Rights Commission might want to consider it because it could disadvantage people with disabilities or First Nations people who have been disproportionately affected by COVID-19. Interestingly, the Queensland government itself recognizes the disproportionate risk faced by First Nations people9, which immediately raises an issue of equity.

Most developed democracies have similar processes to challenge and change publications and policy. It is important to remember that the speed of scientific discovery might be outpacing people’s ability to assimilate the growing body of evidence, and that members of the public - every single one of us - can play a role in challenging misinformation whenever we see it.