A candle in the dark

Sep 28, 2016 15:16

This is probably going to get reposted to Tumblr, because it's personal-political.

A Chronic Fatigue/ME rally as a watershed moment )

headspace, news, health

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Comments 4

klrmn September 29 2016, 00:38:50 UTC
I'm glad you were well enough yesterday to go do this and learn all this awesome news. i feel like a lot of the chronic illness plaguing us can be solved using basic science like this. and i'm happy to support the Open Medicine Foundation in tackling conditions that aren't flashy/profitable enough for drug companies and too slippery for the government. I hope they can crack CFS first, and take on FM after.

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klrmn September 29 2016, 17:50:01 UTC
oh, hello, http://www.pnas.org/content/113/37/E5472.full.pdf describes more or less how i've been trying to fix myself. if i were to stop taking all of my supplements, i'd probably qualify for a CFS diagnosis. well, now i know who i'll donate Pete (PT Cruiser with dying transmission) to.

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klrmn September 29 2016, 17:50:10 UTC
I'm glad you were well enough yesterday to go do this and learn all this awesome news. i feel like a lot of the chronic illness plaguing us can be solved using basic science like this. and i'm happy to support the Open Medicine Foundation in tackling conditions that aren't flashy/profitable enough for drug companies and too slippery for the government. I hope they can crack CFS first, and take on FM after.

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amanda_nye October 10 2016, 03:08:57 UTC
wow. I didn't realize that research had gotten so far recently.

I'm one of the odd people who has know about CFS/ME from when I was rather young. A woman in my parents' church, the wife of my dad's best friend, was diagnosed with it when I was in Jr. High... she had been increasingly ill and basically bedridden for years. Unfortunately the "answer" they'd been looking for so many years didn't bring any relief, more like a life sentence.

As much as I've learned more about it from you, she was my introduction to how CFS/ME just steals a person from life. I remember how she just faded, then disappeared. It was extremely rare after her diagnosis that anyone outside her home saw her... Once every few years. Asking how she was never got a positive answer. Her 3 children mostly grew up without her being able to participate in their lives. She was an excellent artist and used to make such lovely things... then she couldn't.

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