Vale Jill Viles, self-taught geneticist who researched her own conditions and advanced science

Insomniac

Insomniac

Messages
772
Location
Israel
I felt a bit sad in that she seemed to have energy and intelligence that I don't have. I could not do what she did.

However maybe sometimes, we can do something similar to her, but in a more miniscule way.

If your modus operanti is to diagnose or suspect something yourself, then have to figure out how to get the test for it, then you are already doing what she is doing.

I decided to take a rest from searching diagnostics for a year or two, after ruling out CCI last year. The searching worsens my condition because there is PEM involved in visiting doctors, stress of figuring out how to get a test and being refused tests, or doing the tests.


I wish cases like this woman would reach mainstream media more. It says something about how science is structured and how it could be improved.
 
K

kushami

Senior Member
Messages
774
Yes, indeed. It took me forever to work out what was wrong with me, and my conditions aren't anywhere near as rare or complicated as hers.

I am inspired by the subterfuge she undertook early on to get people to listen to her, include her in studies, and so on.

I think we can all be detectives and researchers in our own small way, although brain fog, PEM and cognitive difficulties certainly don't make it easy.
 
K

kushami

Senior Member
Messages
774
Just noticed that she gave a TED Talk a few years ago:

I haven't watched it yet but will get round to it in the next day or two.
 
You must log in or register to reply here.
Back