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yeah I have noticed myself violating this etiquette once or twice if unknowingly.Well I think the best practice would be to 'disperse and disseminate', meaning not to invade one single chat as a group. It is considered rude to take over the conversation especially if it's off-topic..
a few friends of mine have been wondering what would be the necessary leverage to get NIH to make more announcements like the one we heard earlier this month. is it a matter of getting enough of the right studies thru? positive news stories? it's not really clear what's driving the positive momentum but clearly journalists, government are latching onto it. I read somewhereabouts that vashtag had connections and was able to pull some strings but that can't be the whole picture.
am perturbed by this -- I imagine -- not entirely false impression that, judging from the past 30 years of neglect, it doesn't matter what the large majority of patients think as no one is listening in the first place. the politics of this illness is v, v strange to me. perhaps the art of propaganda is more subtle than I know, but it seems that the underlying problem is not that people/institutions are maliciously spreading misinformation but rather that they're disinterested in really digging deeper... the economics alone of having so many people on total disability for so long should have been a call to action long ago, I suppose #PACE was borne of this...
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