https://www.youtube.com/watch?v=9HWs4-yH8V4 00:00 Intro by Prof Brendan Crabb 15:30 Lived experience by Dr Bronwyn King 28:53 Burnet Oration by Dr Ziyad Al-Aly 1:15:00 Q&A
A copy of the program was posted online. Apparently ME/CFS was barely mentioned and the Burnet Institute thought it was a good idea to invite Nathan Butler (of PACE Trial fame) along as an 'expert' on Long Covid treatments.
I had a look through his publications and I only spotted one mention of ME/CFS. In Long COVID: long-term health outcomes and implications for policy and research (2022, Nature Reviews Nephrology) — It sounds as if he thinks of LC as a different (and new) disease, with a scope wider than the ME/CFS phenotype, eg stroke, diabetes. While encouraging prevention of LC via avoiding Covid, he does emphasise that Long Covid didn't exist before 2020. Though he does talk about the problems with terminology and definitions: LC, PASC, PCC etc.
Ziyad Al-Aly is a strong and outspoken advocate for LC with many well-cited papers on LC that have been discussed on this forum. I agree with your interpretation. I think that probably has a lot do with the patients he is looking at and the type of research he is doing. His research is methodologically very strong, but he seems only focused on using the US Department of Veterans Affairs database (quite naturally since that is where he is employed) so it’s very much 60+ year olds and predominantly males (sometimes as much as 90% males). As such his research centers around older folks with many comorbidities with often severe acute infections, so essentially the cohort that is very similar to the hospitalised/organ damage/acute damage/stroke/PICS cohort. This probably tells us nothing about other cohorts like the predominantly younger and female cohort that suffers from a ME-like LC or the neurocognitive phenotype. With all the different talks about LC and phenotypes it can be quite frustrating when not even researchers seem to understand how important the choice of cohorts and phenotypes is. Even more frustrating when 4 years in the leading researchers still have to discuss the basic problems in nomenclature that are still ever present. Coming up with solid definitions is not that hard...
In the US, there is no patient database because our health care system is fragmented, no single payer, except for the Veteran's Affairs database, and perhaps the large health insurer Kaiser Permanente, or Medicare (people age 65 and older). So that is a major problem for doing large population studies.
I think what Al-Aly's papers are measuring is largely not ME-type LC. If you really look at their analysis, I think there are some pretty big selection bias problems, leading to overestimation of the outcomes they report. But even then, the outcomes they do report are mostly diagnoses of new conditions that seem quite different from ME or ME-type LC. I think that's an important avenue of study, but lumping it all together doesn't really help because these are clearly pretty different outcomes than the type of LC that is more prevalent in younger age groups. Personally, I think lumping together everything that happens after Covid doesn't make a lot of sense, but that seems to be largely where we are. You can see the same sort of outcomes that Al-Aly is looking at after an influenza infection in older age groups and people seem to get ME after the flu, but that doesn't mean those are the same thing.
