Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[MonkeyMan]

Yes, for everyone understands the unimaginable urgency for those lying in bed in darkened rooms day after day, month after month, year after year, suffocating their hopes and dreams and trying hard to keep their mind from madness.

Exactly. Or to put it more bluntly, how soon can you get me out of this hell? That is the ONLY question that matters to some of us.

 

[Neunistiva]

@perrier @drewmaster Many of these researchers are parents or family members of severely ill suffers. They understand this oh too well.

 

[Jill]

Ashley and Janet are kindly posting picture to make us feel more included in the scientific section. Imagine, poor Whitney is probably completely unaware of what his amazing family are doing for us all. Ron has called on personnel friendships to battle this illness and probably done the most a single person has done for this illness in a short space of time . We all know how desperate people are but until the science speaks no one can promise anything. These guys are trying to fast track as much as possible. If there is to be any anger it should be aimed at governments around the world for letting this mess go on ..

 

[Janet Dafoe]

Ashley and Janet are kindly posting picture to make us feel more included in the scientific section. Imagine, poor Whitney is probably completely unaware of what his amazing family are doing for us all. Ron has called on personnel friendships to battle this illness and probably done the most a single person has done for this illness in a short space of time . We all know how desperate people are but until the science speaks no one can promise anything. These guys are trying to fast track as much as possible. If there is to be any anger it should be aimed at governments around the world for letting this mess go on ..

Thank you for saying this. Yes we are just as desperate as you and understand completely. I appreciate this post very much.

 

[Ben H]

Hi Ben, I'm registered and praying I can make it . Is that the room for Sat. ? Any air in there ? 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 )

Hey @Katrina

I hope you can still make it! I'm not sure if that is the same room, but don't worry, air shall be provided...even some of the scientists need it I am told

On a serious note the room will be totally suitable for the purpose of the Symposium of course @AshleyHalcyoneH

Hoping you can make it!


B

 

[trishrhymes]

Thank you Janet and Ashley for posting the photos and helping us to feel included. I completely understand that the discussions on these first 2 days can't be live streamed or shared.

It is a sign of the truly cooperative spirit of these wonderful scientists that they are prepared to speak openly to each other about their latest ideas, discoveries, and developments without having to worry about the confusion their speculations and half developed theories might cause if we all tried to join in. I want them to be able to speak openly and share their ideas, so even better collaboration can develop.

I am really looking forward to listening to the talks today on live stream, though with the time difference, I don't suppose I'll last beyond the morning session.

Is there any idea when it might appear on You tube so we can catch up later?

 

[MonkeyMan]

We all know how desperate people are but until the science speaks no one can promise anything. These guys are trying to fast track as much as possible.If there is to be any anger it should be aimed at governments around the world for letting this mess go on ..

I agree completely. And just to clarify: I'm not angry. Rather, I am awestruck at the determination of these scientists to solve this thing despite virtually no support or funding. What they are doing is phenomenal.

I'm not asking for promises either; obviously no one can say when this will be solved. But what would be extremely appreciated is an educated guess. 1 year? 2 years? 5? 10?

 

[sue la-la]

apologies - i've cancelled this project because my brain imploded

Transcriptions of the Community Symposium (Sat 12th)

i'm hoping to transcribe the 2 talks by Chris Armstrong, and Neil McGregor (University of Melbourne).

i will post them in this thread, when ready - hoping others might proof-read the results / suggest corrections.

(transcriptions, because i can't follow real-time verbal conversation, and know that some of us prefer written dialogue. also youtube auto captions are a little bit sqpoihghin-dksjhgbkj)

 

[Manganus]

(transcriptions, because i can't follow real-time verbal conversation, and know that some of us prefer written dialogue. also youtube auto captions are a little bit sqpoihghin-dksjhgbkj)

Lovely!

 

[sdmcvicar]

Hi Ben, I'm registered and praying I can make it . Is that the room for Sat. ? Any air in there ? 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 )

It's a different room. When I arrived at the Sheraton Palo Alto yesterday night, I found that one of their ballrooms had been booked for the scientists' meeting. Today is at the Paul Brest Hall at Stanford.

 

[Gingergrrl]

Am sending my absolute best wishes to everyone attending and presenting at the conference today. I'm at my third day of IVIG today but am thinking about you all and save me a (virtual) seat @Jesse2233 and @Webdog LOL.

 

[necessary8]

Did dr Naviaux mention anything about the suramin trial? Like, is it already underway, or if not when will it be started?

I know you guys can't reveal any of the science that is being talked there, but maybe this is an information you can share? I understand if not.

 

[trishrhymes]

Oooh, I just clicked on the link in the e-mail. There's a count down clock. 31 minutes to go. Let's hope it works OK. For the first time in my 27 years with ME I am about to 'attend' an ME science conference from my bed. So exciting! Just a pity it's already 5pm here in the UK. No way I'll make it through to the end.

 

[Sidereal]

Exciting!

 

[Alvin2]

Are the links we get in our e-mail personalized or can i send the same link to another person (or does it need a separate registration)?

 

[Ben H]

All aboard!

 

[dancer]

I followed the link and have the "Welcome" page, but no sound yet. SO eager for this! THANK YOU for arranging for live-streaming of this important day!

 

[PeeWee]

can anyone see / hear this, or have we gone wrong?

 

[Alvin2]

All aboard!

9:02:05, nothing yet

 

[Rrrr]

so just have a frozen screen of all their faces. is that what others have? so excited!