Podcast: Post Exertional Mayonnaise: Eliza Charley: ME and the cult-like nature of psychologisation

I struggle with searching the site here, but I have wondered for a while if there is not a thread already if we should have one devoted the Post Exertional Malaise series. I have not seen all the podcasts, but those I have are well worth watching.
 
Excellent video. Thanks to Eliza and Dan. :thumbsup:

Sadly, what Eliza said about the state of medical attitudes to ME/CFS in Australia is all too true. It really is seriously messed up here. But that is what happens when you have people like Lloyd, Hickie, Glasziou, and Swan holding the reigns. :grumpy:
 
To note: Eliza and her Mum both also spoke eloquently in Dec 2023 on Australian radio. Both her parents are professors. I'll re-quote them from our Australian thread —

SNT Gatchaman said:
Host (05:42): "It's interesting to me. I have a similar experience with my family ... a person with POTS, endometriosis and so forth. As a scientist, what I come up against a lot is what I would consider a non-scientific approach to certain healthcare."

Mum (a career scientist): "Yeah well I think initially ... well I knew she was sick and I knew it wasn't psychosomatic. But you know, you follow what the medicos are saying. And you see it making them worse. [...] My husband Andy who's a professor at Melbourne Uni ... we thought we've really got to look into this. And it became clear to us that there's a disjunct between what the scientists are doing in the research, which is extensive and building huge amounts of knowledge, and what's filtering through to the clinicians. I don't totally blame the clinicians - they've got a lot to get on top of and this stuff is very premature, scientifically."
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SNT Gatchaman said:
Host (18:47): "So Ros you and I, I think, are a bit old-worldly ... in our approach to science, in terms of falsification, Lacanian model of science, and the way we approach science. And this is one of the things I've struggled with in healthcare, is that there are many providers who don't seem to follow what I would consider the scientific method. They seem to sort of jump a step, if you will, to a conclusion without necessarily gathering enough information to make that, or at least try and falsify that conclusion in any way, shape or form. This seems to be the problem here in some sense where there's an old paradigm that we need to shift — and yet the impetus to shift it is coming not from within, but potentially from without."

Mum (Prof Ros Gleadow): "Yeah exactly, and I think in terms of the way science progresses, there is resistance. [...] But then you have new ideas and eventually you start accumulating, as Kuhn would say, you accumulate the anomalies in the paradigm. That's absolutely where we're at now. And then you get to a crisis [...] everybody now, all the new people now, know something's wrong with the old way of looking at it."
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(It won't be lost on anyone here the irony of the biopsychosauruses having titled their paper "Anomalies in the review process...")


EDIT: Added link to radio episode.
 
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DigitalDrifter said:
@31:00 She starts talking about sacrificing other areas of her life (for example: grocery shopping) to be able to manage the graded activity they were giving her. This is why I think acti-graphy is important in any open label trial.
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Ideally one with time spent horizontal and maybe whatever measures might indicate it hasn’t been great for health to account for all the variations (inc someone still having to do all that but the gait being what shows how unwell they were doing it or being collapsed where they might have been able to read etc before in off time etc)
 


SNT Gatchaman said:
To note: Eliza and her Mum both also spoke eloquently in Dec 2023 on Australian radio. Both her parents are professors. I'll re-quote them from our Australian thread —





(It won't be lost on anyone here the irony of the biopsychosauruses having titled their paper "Anomalies in the review process...")
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@SNT Gatchaman would this radio interview be available to listen to anywhere?
 
MEMarge said:
For those, like me who didn't know what the Lacanian model of science is -#3

"For Lacan, science is about knowledge rather than “truth”, and the latter is regarded as something which rather belongs to the spiritual or religious realm (1966)"
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Thank you @MEMarge I need regular reminders.

FYI, The science and political philosophy podcasts are full of people arguing their points with appeals to this guy’s stuff scattered liberally though out if ever you fancy a bit of getting sick of knowing what he was all about according to others trying to make a point.
 
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