The risk of long COVID is real. But exaggeration does not help anyone

Although we don't have the full details of the study and it has not yet been peer-reviewed, in and of itself this finding is not particularly controversial as it aligns with a number of other studies reporting similar findings.

What was controversial, however, was the suggestion by Dr John Gerrard, the Queensland Chief Health Officer and co-author of this study, that these findings along with other findings with similar results, signal that its time to stop using the term long COVID. The rationale put forward was that the term long COVID creates unnecessary alarm which may be damaging to the broader public.

Not unexpectedly, what we saw following these comments was an avalanche of commentary.

Without rehashing the commentary over the past weeks, those unhappy with the proposition have argued against this from a number of different perspectives.

From a scientific perspective, notwithstanding the limitations of what we know about the Queensland study itself, the call regarding the long COVID label does seem like a clear case of overreach. We are still very early in our understanding of this syndrome and the science is far from settled.

However, probably strongest argument against this proposition was based on a human perspective.

It's hard not to agree with what others more qualified to comment on this matter have said in that long COVID as a disease label plays an important role in providing validation for those suffering from this syndrome.

I call recall in the '90s the psychological toll of what those with CFS/ME had to go through on top of their physical symptoms because the weren't recognised as suffering from a real illness.

Having a label for a disease and being reassured that you are taken seriously does make a huge difference to those affected. And thankfully no one is denying that long COVID is real illness.

One of the unfortunate parts of what has transpired, however, is that all the controversy around using long COVID as a label has drowned out the conversation we should be having, and the actual reason for the comments made around this study's findings.

This is whether there is a real gap between the actual risk that long COVID poses to the community and the perception of this risk.

The problem is that there is a lot confusion along with some misrepresentation of the evidence regarding long COVID risk on social media and the internet.

However, the most rigorous studies of long COVID prevalence in the post-vaccination era do seem to be converging to tell a similar story that the prevalence is around the 5 per cent ballpark.

Once again, I am very deliberately giving a round imprecise number here to reflect the scale of the threat and not imply that we know more than we do.

And whilst we know that there are those that present with severe and debilitating symptoms, for many long COVID presents with relatively mild symptoms.

And as highlighted at the beginning of this article, though in no way being dismissive of long COVID and its importance, it does seem to share many features with other post viral syndromes, suggesting overlapping mechanisms, which really isn't that surprising.

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Now here's the part where we need to calm the fire and introduce some nuance. We need to understand that it is entirely compatible to want to accurately communicate the threat that long COVID poses to the broader community, but at the same time be passionate about advocating for long COVID sufferers.

We are clearly dealing with a lot of people who are affected.

And even with most presenting symptoms on the milder end of the spectrum and with good prospect for full recovery, the fact that there are those that are very severely affected is a significant issue that deserves our attention.

But in saying this, we do have a responsibility to do our best to ensure that the actual risk of long COVID is not exaggerated.

It serves no one to inflate the risks, not even long COVID sufferers. When experts overhype threats, apart from causing unnecessary anxiety, it undermines trust in science and public health, which in turn makes it harder to support those that need our advocacy.