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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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So... streaming link?
So much love in the room today at the TEDSummit. It was HARD. I started having expressive aphasia yesterday as a consequence of all of the cognitive effort put into attempting to memorize a 2,600 word, 15 minute talk. I honestly did not think I would make it.
I began the day with a saline IV, thanks to a few angels, and pulled out every single trick I have just to get on that stage. I ran into a brick wall about five times during the talk when there was just nothing but blank – no words, no thoughts. But everyone stood and silently cheered and sent up love and support when I stumbled. And I made it! To the end! It was hard because the old me, the me that I was and still am, wants to nail it, wants everything to be flawless. And I realized on stage that it's OK to let what is broken be broken. That it's more important to be true.
<continues at link>
https://www.facebook.com/canaryfilm/posts/722146337923102
I think non-Facebook people can still view the post, maybe someone could confirm?
Her story of how she managed this talk was very moving--including a photo of her getting a saline IV beforehand.Post from Jen on the Canary in a Coal Mine Facebook page;
https://www.facebook.com/canaryfilm/posts/722146337923102
Getting 'head cramps' comes to mind. They're not fun.I caught that @mfairma and have requested the article be edited to better reflect the content of the talk. Hopefully that won't take too long
Thank you everyone for your kind words and support. I am pretty destroyed right now. I almost never get cognitive PEM but in the process of memorizing the talk, pushed myself to a place I didn't know I could go, and started experiencing symptoms I haven't had in three, four years. Wish I could say more but this support means everything. It carries me. Thank you.
Imagining a distinct border between mind and body has been a useful rule of thumb since Enlightenment philosophers dreamt it up centuries ago. It’s been particularly useful for modern medicine which has focused its scientific eye on the rational, physical body — and for the most part left the mind with all its mutability and moods to others to cure.
Brea started doing her own digging online, finding a whole population of millions of people with similar symptoms who had been diagnosed with chronic fatigue syndrome, an widespread phenomenon that is poorly understood and badly under-researched
I guess we just have to promote the heck out of it. And get everyone we know, and people we don't know, to watch it. Send it to our political representatives. Try to get journalists interested. Can we get it on the CDC website? Get CFSAC to promote it?What can we do to promote the video? It sound like we've got a chance of something fantastic going viral?
I guess we just have to promote the heck out of it. And get everyone we know, and people we don't know, to watch it. Send it to our political representatives. Try to get journalists interested. Can we get it on the CDC website? Get CFSAC to promote it?