Do not oversimplify Long COVID.

Dr Nisreen Alwan on the challenges of studying Long COVID.

We have to admit that Long COVID is incredibly difficult to study in epidemiological research. The oversimplification needs to stop because it is damaging to patients and we know more about the nature of this condition now that we have to do better.

Some points to consider

One-point-in-time assessments are next to useless due to the fluctuating nature of the symptoms and their triggers. Assessment has to be longitudinal if asking about specific symptoms, if not possible ask participants themselves about their pattern, not symptoms on one day.

Assessment of recovery is very complex. Ask many people with Long COVID and they can tell you how many times they thought they recovered (sometimes remission for months) and then, bam, symptoms are back. Thoughtful questions about recovery vs managing symptoms to function are necessary.

The famous ‘control group’ business needs careful consideration. Selecting controls is really tricky and the authors of some of the studies claiming rigour just because they have the word control in there should know better.

Here are some issues around control selection.

I still think we need a proper description of patterns of illness over time. Lots of detailed accounts of how the illness manifests for people. What they do to minimise their dysfunction. How the physical, cognitive and stress triggers operate and on what time scales.

We basically need huge diary-based studies. Smaller studies could be accompanied by biomarkers and scanning, etc. but the diaries are essential to explore how the symptoms relate to the pathology over time.

Don’t call this unrealistic. We just need to think through this.

Most importantly, don’t design studies without input from people with lived experience. Don’t dismiss lived experience as biased. This sort of thinking can lead to a huge waste of time and money because the questions don’t get asked in a thoughtful and meaningful way.

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Sources

• Text: This piece was first published as a Twitter thread and turned into the above article on 29 January 2022 with the purpose of reaching a larger audience. It has been minorly edited and corrected, and published with the author’s consent. | The author of the tweets writes in a personal capacity.
• Cover: Unsplash/Heike Trautmann. (Licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.)