3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

Rain said:
How long does it normally take before the videos are posted on OMF YouTube channel? And do they always post all the talks?

(I can’t watch much in one sitting, live streams are difficult for many of us.)
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Hi @Rain

I'm not sure about YouTube but as it's being streamed on Facebook I think you can view it's straight away after its finished on there. I don't use Facebook much so not totally sure but I think that is the case. If I find out, I'll update r.e. YouTube.


B
 
Hanson seemed unusually confident about ME/CFS being caused by a virus. I wonder if that is related to something they've recently found.

PS she also thinks that we're no longer seeing larger epidemics because the virus responsible for ME/CFS has become endemic. And that is has gone unnoticed because it doesn't cause obvious problems like HIV, polio, or Zika do.
 
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Juan Santiago with his red blood cell mechanics work came across as a really careful good scientist. His team have been doing what appears to be useful work on how to measure RBC deformability - useful for many purposes beyond ME/CFS.

Sadly, despite quite a large sample, they didn't find any difference between healthy controls and PwME. He's not ruling out differences but there seems to be a huge amount of variability between individual samples. Santiago suggests that there is a lot of noise, with things like a bit of exercise potentially changing deformability.

I'm thankful that scientists of his quality have applied their expertise to studying ME/CFS. I hope that he'll keep looking - perhaps tracking individuals before, during and after exercise.
 
strategist said:
@Jonathan Edwards if I understood correctly, Dr Moreau is finding that PEM provoked with a stress test he is developing is associated with reduced time in REM sleep (it is a bit hard to understand because he talks quickly and has a French accent).
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Reduced time in sleep full stop here. PEM provokes an adrenaline spike which can mean very little sleep at all. Generally very little deep sleep at all.
It may be worthwhile to collate data if people have same Fitbit type device. There is a lot of available data from wearables. Algorithms may unlock commonalities
 
Mike Snyder was saying the same things. His team have found that an increased resting heart rate can be an early warning of episodes of acute illness. He's interested in how that might work in chronic illness too. He's doing a study (not specific to ME/CFS) with people wearing wearable devices.

Certainly I have an increased resting heart rate when I'm worst, ME/CFS-wise.
 
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