Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

Discussion in 'Latest ME/CFS Research' started by Ben H, Aug 9, 2017.

  1. drewmaster

    drewmaster

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    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.
     
    Esperanza, trails, merylg and 9 others like this.
  2. Neunistiva

    Neunistiva Senior Member

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    @perrier @drewmaster Many of these researchers are parents or family members of severely ill suffers. They understand this oh too well.
     
    merylg, MeSci, atleje and 28 others like this.
  3. Jill

    Jill Senior Member

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    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 ..
     
    skylark, meg22, NK17 and 58 others like this.
  4. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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

    Ben H OMF Correspondent

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    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 :D

    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
     
  6. trishrhymes

    trishrhymes Senior Member

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    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?
     
  7. drewmaster

    drewmaster

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    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?
     
    Last edited: Aug 12, 2017
    MEMum, Wonko and Aroa like this.
  8. sue la-la

    sue la-la

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    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)
     
    Last edited: Aug 12, 2017
  9. Manganus

    Manganus Senior Member

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    Canary islands
    Lovely!

    :star: :star: :star::star: :bouquet:
     
    MEMum, Ben H and sue la-la like this.
  10. sdmcvicar

    sdmcvicar

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    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.
     
    Katrina and MEMum like this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    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.
     
    valentinelynx, merylg, justy and 6 others like this.
  12. necessary8

    necessary8

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    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.
     
    Jan likes this.
  13. trishrhymes

    trishrhymes Senior Member

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    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.
     
  14. Sidereal

    Sidereal Senior Member

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    Exciting!
     
    rosie26, BurnA, MEMum and 2 others like this.
  15. Alvin2

    Alvin2 If humans were rational...

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    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)?
     
    MEMum likes this.
  16. Ben H

    Ben H OMF Correspondent

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    All aboard!
     
    Missense, mango, aimossy and 2 others like this.
  17. dancer

    dancer Senior Member

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    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!
     
  18. PeeWee

    PeeWee

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    can anyone see / hear this, or have we gone wrong?
     
  19. Alvin2

    Alvin2 If humans were rational...

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    9:02:05, nothing yet
     
  20. Rrrr

    Rrrr Senior Member

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

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