What is a proper DALY weight for ME/CFS?

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

A DALY weight is used to calculated years lost to disability from a disease. It's an estimate of your percentage of health with a certain condition. If a certain condition is rated at 0.2, it means we estimate that life is about 80% as good as without illness, so we figure living a year with that disease is as good as living 80% of a year without it.

They list post-acute consequences of infectious disease as 0.219.

I find that worrying unless they have a methodology of averaging, and that takes into account the large number of mild cases.

Because 78.1% health doesn't do any justice to what we experience.

Someone else listed autism at 0.510 and Asperger's at 0.408.

Nowadays we'd generally call Asperger's autism with low support needs. I have autism with low support needs and mild ME, and there's no way having autism is twice as bad as mild ME. I'd give my personal experience with autism about 0.08 and mild ME about 0.6, which is comparable to other devastating, life-ruining health issues like MS, Parkinson's and kidney disease.

I'm starting to thing the methodology behind these numbers is dodgy, and besides, nobody can put suffering into a number.

 

I think the weight for ME just doesn't exist officially in the WHO list. This Danish study, based on a questionnaire, came up with 0.47, while this study references an Australian report that calculated 0.14, 0.45 and 0.76 for mild, moderate and severe CFS (for comparison WHO says mild, moderate and severe MS are 0.18, 0.46, 0.72).