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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 psychogenic disorders have clear and objective (positive) signs. That sounds absolutely nonsensical on the face of it.

LOLOLOL ....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 just didn't want anyone videotaping today." It's not like the tenor of the talks I have attended have changed in any meaningful or observable way. 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 case for everyone, or may not be the case in every 'stage' of ME. Early in the disease, for example, I had hypoglycemic episodes and needed to keep...

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 followed by a 'crash'. At this point I want POTS + no PEM; ME + POTS; and ME only in a room and start firing questions at groups of people!

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 do, even if their hallmark symptom are issues with changing position. POTS is often post-viral (first I've heard of that). But from my interactions...

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 Kaufman (Silicon Valley physician) and Dr Friedberg (IACFS/ME). My impression is that we should be here in force. Not once. There are mentions of...

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 if I've been still awhile it's really tough to move again. Whoa! I noticed it with B2 (and, to a lesser degree, B6). I didn't even realize I was...

The man's Twitterstream is an alternate reality.

Can't help but add this one:

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 creepy, because it seems as though he's gently encouraging us to 'think positive', and because it seems like that's really bait. While the retraction...

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... but I've always found it easier to keep moving gently than to push hard and rest afterwards. I still have my protocols on the Other Forum here.

Whew, this ride is moving pretty fast! Interesting observation. For sure. The Type A personality + lazy, support-seeking slug comes to mind. Activity-phobic plus boom and bust, too. I'm sure they'd explain this by saying there are many types of patients though. You can come to the same...

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 the first idea of what causes them. A few of my favorites: 1) 'Internal vibration'. No, doc, you can't see it; sorry. 2) Sudden bruising...

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 that most doctors reject complexity. If it seems too complicated, they experience the BSOD and you must not be reporting faithfully. Re: the tremor --...