After I was first diagnosed with EDSIII 6 years ago and began to look at the literature and saw that this was the only form of EDS for which the...
When @Barry mentioned upthread the idea of stress from surgery pushing patients back into remission, my first thought was, didn't Suzanne Vernon...
Perhaps @dave30th could submit something as it would probably be pretty easy to dust off what he's already said elsewhere? Just a thought.
When in the midst of the hell that is ME, all we tend to think about is how much better it could be if we just got treatment. How much we just...
I'm one of those with a hEDS diagnosis (FWIW), and too much rest for me will result in problems with injury/joint instability. I have some...
Precisely. However for those of us with monthly cycles, there is, or strongly appears to be, a distinct cycle to it. ;-)
The discussion seems to be stuck with the idea of studying sleep, which, to be fair, was suggested in @Jonathan Edwards 's OP. What I sense from...
How would you measure just not getting worse? Management advice that patients give each other usually seems to focus on that (eye masks, limiting...
This. To say nothing of the fact that I cannot think of a disease LEAST suited to nursing homes given the problems with sensory stimuli and...
While I'm only 46 so still have a few more years before I have to think about this (knock on wood), I worry about what is going to happen when I...
I've been on rivaroxaban - Xaralto - for almost three years after 10 years on Coumadin after unprovoked bilateral pulmonary emboli in 2006 (it was...
Your phrasing there gave me a full belly laugh. Cheers. :laugh:
Me too! Most people reading/listening to this story are going to see/hear headline and go "oh yeah, I heard that story already; why are you...
This has been my thought also. Mostly Sharpe et. al just come across as a bit pathetic. As @Jonathan Edwards pointed out way way way back at the...
But he did try to get STAT to retract Julie Rehmeyer's paper.
@dave30th quoted the email that Michael Sharpe sent to the editors of STAT News to get them to retract @julierehmeyer (is she not a member...
Well, I couldn't help but point out that Sharpe himself tried to silence Julie Rehmeyer. I imagine his response (if there is one) will be to say...
And now there's a deLIGHTful</sarcasm> article at NPR about it and its treatment: HyperMegaSuperGET (how do I put a trademark sign on that?)....
@Diane O'Leary I could be reading both you and @Jonathan Edwards wrong (always a strong possibility!) but I get the sense that among Jonathan's...
@Snow Leopard Very interesting links for ways we might measure function more directly rather than simply how one feels about his or her function....
Separate names with a comma.
