NIH's "Accelerating Research on ME/CFS" Conference April 4-5, 2019 - livestreaming

raghav

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The video is freezing every few seconds and then it completely stops. Happened yesterday also. Anybody else have this problem ? Maybe the submarine link connecting to India is slow or over loaded ? Or is NIH site having too many hits ? Unable to watch anything. I am watching Cort's posts.
 

sb4

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@raghav I have that problem also so its not just india. I just keep refreshing it and hoping it starts working. I missed the first hour because of this and many hrs yesterday also.
 

ljimbo423

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The video is freezing every few seconds and then it completely stops. Happened yesterday also. Anybody else have this problem ? Maybe the submarine link connecting to India is slow or over loaded ? Or is NIH site having too many hits ? Unable to watch anything. I am watching Cort's posts.

@raghav I have that problem also so its not just india. I just keep refreshing it and hoping it starts working. I missed the first hour because of this and many hrs yesterday also.
You might want to try lowering the quality of the video by clicking on the icon that looks like a gear between the "CC" icon and where it says "youtube". This uses less bandwidth and often stops the video from freezing.

EDIT-I just realized your probably talking about the live video and changing the video quality might not be an option.
 

Hopeful1976

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This was happening to me and then I figured out it was when I'd refreshed the page (It had opened another tab showing the conference, with the old one still in a separate tab). Getting rid of the extra tabs sorted it out for me (I'm watching on mobile)
 

sb4

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I wonder if the stream goes down at the same time for everyone, mines just gone off mid way through Ron Davis speech.
 

Diwi9

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Great, because I want to share some of this info on my Facebook. I'm done with us being "invisible." This conference made it very clear that we are not head cases. How do we inform the public about ME/CFS when the CDC and NIH will not? All I know is to spread the word through our personal networks...and I'd love to share some of these presentations...especially Systrom's and Keller's.
 

Moof

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The exosome finding is absolutely huge, and got me very excited. However, Anne Oaklander's presentation was the one that really threw my thinking up into the air.

I can remember from childhood tickling games that I had fibromyalgia tender points at least from the age of four, and possibly before that. Then, at menarche (very late at nearly 17 years old), the massive weight loss because I suddenly couldn't digest food. Then the fatigue and PEM.

I doubt I'd be able to get accurate skin biopsies done in the UK, but I ought to read more about her work. I've never even bothered pursuing a FM diagnosis, as it's always seemed like a secondary concern to the ME...if SFPN is potentially treatable, maybe I should!
 

Moof

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I was also intrigued by Dr Prusty's talk yesterday, but it was badly affected by connection dropouts and I'm not sure I really understood what he was saying. It appeared to be that herpesviruses may affect only a tiny minority of cells, but still be capable of causing symptoms; is this correct? I began wondering if this is the reason researchers can't find many infections in ME, but as I didn't hear the end of it, he may have been making a completely different point.
 

Belbyr

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Completely disagree!

This is huge: Not only has Ron Davis done further work to confirm that "something in the serum" is affecting patient cells, but he also now thinks he knows what it might be


The tiny mystery item in the serum is now believed to an exosome, which is like a tiny little bubble of itself that a cell spits out.

https://en.wikipedia.org/wiki/Exosome_(vesicle)

The good news about exosomes is that MECFS researcher Maureen Hanson has been pursuing them since 2017, as explained here: https://www.healthrising.org/blog/2017/09/30/three-nih-funded-mecfs-research-centers-controversy/
I missed this one due to being back in the ER. What about Ian Lipkin, he share anything crazy?
 
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I was also intrigued by Dr Prusty's talk yesterday, but it was badly affected by connection dropouts and I'm not sure I really understood what he was saying. It appeared to be that herpesviruses may affect only a tiny minority of cells, but still be capable of causing symptoms; is this correct? I began wondering if this is the reason researchers can't find many infections in ME, but as I didn't hear the end of it, he may have been making a completely different point.
Also very interesting that he made kind of the same plasma swap experience with infected MECFS cells as Davis did. Their mitochondrial function was altered when in sick serum and turned back normal when in healthy blood.