A proposal for further developing fatigue-related post COVID-19 health states for burden of disease studies 2023 Wyper et al

[Andy]

Abstract

Previous efforts to estimate the burden of fatigue-related symptoms due to long COVID have a very high threshold for inclusion of cases, relative to the proposed definition from the World Health Organization. In practice this means that milder cases, that may be occurring very frequently, are not included in estimates of the burden of long COVID which will result in underestimation. A more comprehensive approach to modelling the disease burden from long COVID, in relation to fatigue, can ensure that we do not only focus on what is easiest to measure; which risks losing focus of less severe health states that may be more difficult to measure but are occurring very frequently. Our proposed approach provides a means to better understand the scale of challenge from long COVID, for consideration when preventative and mitigative action is being planned.

Open access, https://archpublichealth.biomedcentral.com/articles/10.1186/s13690-023-01212-1

 

[Andy]

Absolutely no mention of ME/CFS in the whole document, however they do note

Finally, the symptomatology of long COVID has been compared to that of fibromyalgia

which references this single study, Fibromyalgia: a new facet of the post-COVID-19 syndrome spectrum? Results from a web-based survey, 2021, Ursini et al

 

[Hutan]

This seems like an important issue to give attention to - how to calculate estimates of years lost to disability. You can't manage well what you don't measure. And, if you measure it wrong, the management will probably be wrong too.

I hope patient charities will read this paper and consider what action needs to be taken on definitions. I haven't read the paper properly yet, but this is Table 1 - the authors are suggesting adding descriptions similar to the anemia ones in order to capture lower levels of debility, which seems reasonable. But, it looks like there is a serious disconnect between someone's impression of fatigue-related post Covid-19 health states and reality in terms of the existing definition with its focus on insomnia, emotional lability and depression.

Further research could be undertaken to test the validity of this proposal. Long COVID patients with fatigue could be surveyed over how closely their symptoms match to the health state descriptions outlined in Table 1.

Now there's an idea. Or talk to Long covid associations?

 

[RedFox]

This discussion inspired me to create another thread: What is a proper DALY weight for ME/CFS?