Thread by @Dr2NisreenAlwan

We have to admit that #LongCovid is incredibly difficult to study in epidemiological research. The oversimplification needs to stop because it’s damaging to patients & we know more about the nature of this condition now that we have to do better. Some points to consider:
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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.
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Assessment of recovery is very complex. Ask many people with LC and they can tell u 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.
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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. Some issues here:
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nisreenalwan.wordpress.com/2021/10/16/lon…

I still think we need 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 are the physical, cognitive and stress triggers operate and on what time scales.
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We basically need huge diary-based studies. In smaller studies, could be accompanied by biomarker 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.
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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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