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It was great listening to your experience navigating the murky clinical trial world, and it’s something I admit primary docs have no time to really help patients with. Reliable sources and experts in this regard would be great. I also appreciate the nuance and kind of disclaimer you wrote to accompany this podcast intro. Not sure about the host, reading his about page there is a definite undercurrent of “anti-woke” stuff (I don’t pretend to understand what this even means, as it likely has different connotations for different people), and a sort of science-skepticism from a JD point of view that makes me nervous. But I don’t know and don’t have time to read much more than that!

I do give major credit to real scientists, clinicians, and even pharmaceutical companies. Where would we be without these folks? B12 shots and castor oil for everyone?

Great interview and i think you handled the questions with grace, compassion and expertise!

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Hi Bess, I deleted a note I made under the podcast yesterday as my point only spoke to one part of what you've described here.

You've articulated the conundrum eloquently. I've spent 2 decades working in the pharmaceutical industry, and now, as a caregiver, I leverage my knowledge of medical terms, science and references as much as possible.

I support, empathise with, and try to actively help friends and family who are less medically aware. I battle and navigate the labyrinth of the 'kafkaesque' system you've described—we have to learn the system in order to translate it to our needs.

And yet, we've encountered doctors and other healthcare professionals who've gone above and beyond to fill the gaps and help us translate/navigate our way through the system.

The trouble here in the UK, in addition to what you've described, is the lack of doctors and nurses available; those available are having to strike for more pay or move elsewhere.

Thank you for this article, and your thoughts. As always, my thoughts and prayers go out to you, Jake and your family.

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