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

Sasha said:
Are any forum members going to this symposium?
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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!
 
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.
 
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?
 
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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'm enjoying it. I'm not sure I'll remember much of it, but I like that I'm seeing that there's real progress towards understanding at least some of what it going on.

One interesting point from Maureen Hanson - her metabolomics study findings match well with Naviaux and other studies.

Alain Moreau's micro RNA data looks interesting too, in that they are finding definite differences from healthy controls and finding subgroups.

And Jonas Bergquist has found interesting metabolites in cerebrospinal fluid that are indicative of inflammation, if I understood it correctly.

And Ron Davis explained that the virus testing they did with blood would show any viruses anywhere in the body [edit - and they found less than in healthy controls]. And they are moving on to check for RNA viruses, and other types of pathogens.

That's all I can remember!
 
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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 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
 
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