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Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

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60
After so many years of utter despair at the lack of progress being made in ME research, and moreover the lack of interest in trying to understand this disease (or group of diseases), it gives me so much hope to see these brilliant minds and wonderful people in London, sharing their ideas, enthusiasm and knowledge and inspiring others to help to solve the riddle of ME/CFS.

No prejudice. No stigmatisation. No abuse. No harassment. No psychobabble.
Just real scientists. Doing real scientific research. In real collaboration. Giving real hope.

That's all we've been asking for.

Thank you. Thank you. Thank you.
 
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AshleyHalcyoneH

Open Medicine Foundation
Messages
66
Location
Bay Area, CA
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A room full of scientists working together to fight ME/CFS!
 

BruceInOz

Senior Member
Messages
172
Location
Tasmania
Due to the confidential science discussed during the first two days of this meeting we cannot share talk specifics but we are starting off the day with a talk by Vicky Whittemore from the NIH!
I don't understand this. How can stuff presented at a meeting possibly be confidential? Confidential from whom? Who decided who could hear it and who could not? How is that science?
 

AshleyHalcyoneH

Open Medicine Foundation
Messages
66
Location
Bay Area, CA
I don't understand this. How can stuff presented at a meeting possibly be confidential? Confidential from whom? Who decided who could hear it and who could not? How is that science?
Scientific research that is still in progress and not published or ready for the public is being presented and therefor cannot be shared on social media. This part of the meeting is scientists presenting current and ongoing research results, discussing, and brainstorming. On Friday research will be presented to the public.
 
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2,158
I don't understand this. How can stuff presented at a meeting possibly be confidential? Confidential from whom? Who decided who could hear it and who could not? How is that science?

I know it's frustrating, but I think it's great that a room full of scientists from all over the world are coming together for 2 days out of the public eye to share their latest research well before it reaches the stage of being finalised and confirmed for publication. If it were public, they would not be free to toss around ideas, correct or contradict each other, tell each other about new lines they are following and so on.

It's good that they are willing to collaborate like this, not each sit isolated in their labs and clinics only letting the world know what they are doing when they publish. It should help the science to progress faster.

Friday's conference is where they present their latest findings that are sufficiently evidence based to be ready for us to hear.
 

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
View attachment 21508 View attachment 21509 View attachment 21507 Hi Everyone!
Ron and Ashley arrived in London today and were able to walk around London a little before collapsing in their hotel. Linda arrived later tonight. I am posting little updates on twitter, but I thought I'd post my tweets here too, with photos they send me. Ashley will be tweeting on the @OpenMedF twitter account. She is also goiing to make a video of Ron at some point. I'm home with Whitney. I'm sad not to be able to go! It's hard. I'm going to try to add a couple of photos now using my phone! :)
These are great photos. We don't see many pictures of Ashley and she looks beautiful. Wish you could be at the event too. Take care @Janet Dafoe (Rose49)
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
Janet and Ashley, thank you so much for starting this thread to keep us updated. I'm deeply grateful to Ron and all the scientists in the room.

That's MOLD on Ron's tie!

Janet, I see Ron has images of mold on his tie. Does that mean he thinks that mold is important to the pathogenesis of ME? (I realize you may not be able to tell us.)

If mold turns out to be important, that worries me, because I am bedbound and too sick to go camping in the desert! I am usually too weak to walk to the bathroom four steps away. My parents have already done everything they can think of to eliminate mold in our house.

Thanks!
 

paolo

Senior Member
Messages
198
Location
Italy
The tie with fungi on it remindes me of the "RNA tie club" founded by James Watson and Gamow back in the Fifties, that included a group of scientists involved in understanding the role of RNA in proteins building, if I am not wrong. They used to wear a tie with an helix on it. So this tie might have some important meaning indeed...
 
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AdamS

Senior Member
Messages
339
They used to wear a tie with an helix on it. So this tie might have some important meaning indeed...

Interesting...mold exposure has been linked to ME/CFS many times in the past. It is also associated with reductions in VEGF, a signal protein that contributes to restoration of oxygen supply to tissues when blood circulation is inadequate such as in hypoxic conditions. Seems that VEGF-A was found to be significantly reduced in ME patients here.

I'm just thinking out loud and tying a few dots together, I could be way off, very exciting stuff either way, Ron is the man!!
 

paolo

Senior Member
Messages
198
Location
Italy
Fungi are the worst enemies of bacteria, since they often compete for the same food (even in human gut). Mitochondria were bacteria about 1.5 billion years ago. So, there might be a link here.
 

Jo Best

Senior Member
Messages
1,032
Just a thought for this thread: May 31st is the last day of the earlybird price of the IIMEC12 DVD.
This will be the full presentations of the public conference day (June 2nd) and the pre-conference evening dinner presentation by David Tuller (not the talks from these two days of the researchers colloquium).
Link for info and to pre-order DVD: http://www.investinme.eu/IIMEC12-DVD-Order-EB.shtml
 

AshleyHalcyoneH

Open Medicine Foundation
Messages
66
Location
Bay Area, CA
Just a thought for this thread: May 31st is the last day of the earlybird price of the IIMEC12 DVD.
This will be the full presentations of the public conference day (June 2nd) and the pre-conference evening dinner presentation by David Tuller (not the talks from these two days of the researchers colloquium).
Link for info and to pre-order DVD: http://www.investinme.eu/IIMEC12-DVD-Order-EB.shtml
Thank you for letting people know!

Also, OMF's twitter is up and running if anyone would like to follow along!