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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

Kati

Patient in training
Messages
5,497
The last 2 days have been like a live-stream without giving any content away. A bit bitter sweet if you ask me. I am hoping that good scientific content will be offered tomorrow with an opportunity for 'outsider' scientists to participate and enter the field.
 

Janet Dafoe

Board Member
Messages
867
Dr Olivera from @UUtah presenting on chemical neuroethology: a new paradigm for drug discovery!
image.jpeg
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Dear Jaime
A year or two is too long for those who are bed bound and non functional, those who have symptoms around the clock, and can never step outside of their door....

Providing information that may end up being misleading because the idea is untested or the results are preliminary may not be viewed as ethical.

Understandable, generally is it promising / exciting / pointing toward treatments?

Definitely promising and exciting. :) I think everyone will be pleased by what they see / hear tomorrow.
 

Gamboa

Senior Member
Messages
261
Location
Canada
;););)

...but no. :(



But most of them will turn into papers in a year or two... :D
A year or two! That is very discouraging. It is so hard to be patient when we have already waited for decades. I thought we were closer to some news, even some tidbits to keep us going.

I do, of course, understand how science works and know that the study results have to be iron-clad, performed to perfection, so that all the non-believers can't poke holes in them.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
A year or two is too long for those who are bed bound and non functional, those who have symptoms around the clock, and can never step outside of their door....
The publication of papers doesn't necessarily correlate with the possibility of trying experimental treatments. For instance, there might be trials to participate in or some evidence provided that we could present to our doctors to try treatments that are already available--but for other conditions. For example, we don't have full results on the efficacy of rituximab, but some doctors are treating ME/CFS patients with it.
 
Messages
15
Location
Central California Coast
Hi guys,

So I thought I'd start this thread where we can all have a discussion and post any thoughts-pre, during and post-Symposium!

Things are hotting up! The scientists that are flying in tonight and having dinner at the local hotel! I'm sure some good discussion will be had here. Janet @Janet Dafoe (Rose49) had also told me that her house is practically a production line at the moment with Ashley @AshleyHalcyoneH putting together the conference folders full of information for everyone!

So please post away, and myself and @Janet Dafoe (Rose49) will also be posting before and throughout the Symposium.

Enjoy,


B

Hi Ben, I'm registered and praying I can make it .:nervous: Is that the room for Sat. ? Any air in there ? :eek: Still need to find a ride back to Santa Cruz after reception .... anyone going to SC ? Not used to UBER, still Checking here .:)
From the old days - Katrina 1985
( Kathy )