CFS Research Center at Stanford Second Annual Community Symposium Sept. 29-2018

Yes, and I would enjoy meeting any other patients who will be there. What about a signal, since we won’t be seated in a particular area or have “patient” printed on name tags, as far as plans had developed a month back. Maybe an overhead arm wave is a bit too energetic or flamboyant for our ranks. Hope someone has a good idea!

 

Agenda for today's symposium.

 

Looks good - lots of hot topics. I wonder if they'll take questions via the livestream? Do you know, @JaimeS?

It would be good to get a bit of to-and-fro about the more controversial aspects.

Edit: And to ask about what publications are in the pipeline, as @Andy mentioned on another thread.

 

https://twitter.com/user/status/1046058206139691012

 

Linda Tannenbaum says 300 are attending and thousands are following through live stream.

 

Ashley Haugen mentioned an email address for those who wants to submit a question. I can't find it on their website, but perhaps someone caught it and can share?

 

http://www.omf.ngo/questions/

 

Thank you @edawg81 and welcome to the forum!

 

So excited (and slightly nauseated because I had three cups of coffee to get through the livestream ).

Trying to write a German summary for the German Association from my bed-office.

Keynote speaker Oystein Fluge just finished. Now Wenzhong Xiao talks about some results of the Severely Ill Patient Study.

 

I have 86 slides from the first part (the ones that would upload are included), not sure how to upload more, keeps complaining file size is too large
I won't be able to capture slides the rest of the day but i started and it kept going

 

https://twitter.com/user/status/1046102514611957760

 

https://twitter.com/user/status/1046102940795195394

 

This stuff is all waaaaaaay over my head...

Are you watching, @Jonathan Edwards? Anything look interesting to you?

 

Hanson seems optimistic about metabolomics results. She thinks the inability to find subgroups in patients with metabolomics approach suggests that the abnormalities are fundamental to the illness. At least that is what I understood. The presentations so far have not been easy to follow.

Edit: also Xiao said that the TRPM3 gene doesn't show up as significant in their analysis of severely ill patients.

My personal impression is that many researchers are struggling with the heterogeneity of patients, so Hanson's optimism is comforting.

 

I'm finding it very interesting, a few ideas come to mind and some revisiting of previous thoughts.
Its too much information though, i had to zone out during Maureen Hanson's talk, but will view it on youtube in the future

 

I watched Drs Fluge and Hanson with a rest between them. Utterly loving Dr Fluge’s talk where he moved between talk of the patients and the data.

Didn’t understand a lot but someone?? talked of reducing carbs with benefits. I think it may have been Dr Fluge but he was not recommending it as a treatment because there was no data. I hope I’ve remembered that correctly.

I’d like to hear Phair but that’s not till nearly midnight our time, so it may need to wait. If anyone hears it, please can you post something, a sentence or two. I shall look first thing in the morning.

Eta: would also like to hear what Jared Younger has to say

 

They are back from lunch - on now

 

https://twitter.com/user/status/1046192344524083200