lolol:ill:lol The physician Q&A is what I'm doing right now. Pretty interesting. Want to corner the neurologist to examine his claim that...
LOLOLOL [MEDIA] ....apparently he was Tweeting so fast Twitter thought he was a bot.
Maybe from the first day? Initially, they were telling us to not even livetweet Day 2. I talked to Stiles and she said, "it's really fine; we...
Lauren Stiles has told me that there will not be videos of the talks. Powerpoint slides, however, should be available.
Beth wore one yesterday, and we are both wearing our gold shoe pins throughout! My neuro symptoms flare on high carbs. But this may not be the...
I believe POTS patients DO have this problem -- in adrenergic POTS. There was talk of slow adrenaline clearance being a huge issue, and that being...
Yes! Julia is working hard to collate them, and she and Layla are putting a rough outline together. :)
Before yesterday, I would have said what separates us from primarily OI patients is PEM. They have a lot of the same multi-system involvement we...
Part of why we're here is to help make some of these connections. However, we're not the only ME folk at the conference: so far I've run into Dr...
Yes, I'm exceedhergrasp1 on Twitter. :) It's great for breakout sessions because Beth can be in one, and I can be in the other.
Exactly. Well-put. One can only hope.
For sure. Sometimes my legs just give out and I sit abruptly wherever I am.
I definitely note having trouble starting to move, but once I get going it's exponentially easier. I don't freeze in the middle of motions, but...
The man's Twitterstream is an alternate reality. [MEDIA]
Can't help but add this one: [MEDIA]
UGH I almost cited every ME organization but figured he'd view it as Summoning them with my magic Twitter wand to swoop in for the attack. So...
Well. I mean, isn't this the hallmark of ME, besides PEM? Difficulty initiating movement? Maybe we haven't framed it that way in the past......
Whew, this ride is moving pretty fast! Interesting observation. For sure. The Type A personality + lazy, support-seeking slug comes to mind....
It really GETS me how many of these symptoms are shared by many, many patients and not only would this sound nonsensical in clinic, but no one has...
Same. We have so many completely unusual symptoms, I started off in my diagnostic quest trying to list them all. Now I feel like I've learned...
Separate names with a comma.
