No livestream does not mean somebody in the audience will not tweet
Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe
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No livestream does not mean somebody in the audience will not tweet
From Prusty's bio -
My current research interest involves studying molecular biology of HHV-6 encoded small non-coding RNAs and their potential role in human diseases.
https://loop.frontiersin.org/people/240562/bio
My current research interest involves studying molecular biology of HHV-6 encoded small non-coding RNAs and their potential role in human diseases.
https://loop.frontiersin.org/people/240562/bio
MonkeyMan
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Me too. Especially in light of the fact that Dr Naviaux is collaborating with Dr Prusty (as he mentions in his newsletter at http://naviauxlab.ucsd.edu/wp-content/uploads/2019/12/Naviaux-Lab-Newsletter-Winter-2019_v10_sm.pdf), AND Dr Naviaux is a member of the OMF Scientific Advisory Board. You would think this would be creating some excitement and announcements from the OMF. But no. The silence is deafening.
im also hyped for the upcoming paper from Dr. Prusty but we need to stay fair here. I also criticize OMF if i feel like something can be improved but on what should OMF react or comment now ? Random snippets of twitter teases ? Let him publish his data and then see what ppl have to say about it.
Hopeful1976
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I did eventually get a tweet reply from them saying that Dr Armstrong had been in touch with Dr Prusty, but that was all they would say currently...
Hopeful1976
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Good point, seeing it like this I can see how perhaps they haven't commented.
ljimbo423
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I think plasma exchange might only remove the something in the blood. If it did, the source of that something would still be there.
Kind of like a boat taking on water. You can bail the water out but the source of the water, the leak, is still there and continues to fill the boat with water.
My hope is that when they find the something in the blood, they can trace it back to it's source. That source could be the actual cause of ME/CFS.
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bertiedog
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Well I will be 72 on the 11th so wouldn't it be great if we had some definite answers with an ACTIONABLE plan for patients. Been ill with this disease since 2000 so I think its about time they get it sorted, I really don't mind who it is.
To be honest I am so fed up with hearing /watching these scientific conferences with information that sounds encouraging but then it all fizzles out. I cannot help but feel at times that our illness is a great one for keeping many researchers active so that their salaries are safe at least for a couple of years.
I am sure that after all this time you will forgive me for being quite cynical.
Pam
To be honest I am so fed up with hearing /watching these scientific conferences with information that sounds encouraging but then it all fizzles out. I cannot help but feel at times that our illness is a great one for keeping many researchers active so that their salaries are safe at least for a couple of years.
I am sure that after all this time you will forgive me for being quite cynical.
Pam
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With some patients it is actually working, as the results of plasmapheresis show.
Though the filter is directed against certain autoantibodies in the CNS.
i had a set of 7 plasma exchanges in 10 days. Did nothing for me. Also the only study from germany with immunadsorption is pretty skewed because they handpicked 10ppl with the highest antibody count and even the result got skewed. So i dont think plasma exchanges will ever help.
Whatever is releasing the molecule(s) causing cell danger signal is still there. So lets say you filter out all the plasma, but the tissue or cells are still releasing the molecule(s) into your blood stream. So it may not be working. Just my guess. If we block the molecule(s) causing the cells to go into danger mode continuously then after a few hours or days the mito will fuse again and only then will you feel the fatigue relief. Once again my opinion only. Lets wait till wednesday. Hopefully we should have a clearer picture of the nature of the source of cell danger signal and the molecule(s) which are causing all this mess in us.
@raghav i believe in Dr. Prusty's work and that something in the blood can disturb the energy production in the mitochondria. I just dont believe plasma exchange is a way to treat it. More likely SS31/Elamipretide , which stabilizes the mito membran and stops the fission. Thats why i hope they get it to the market this year for barth syndrom so i can off label misuse it to become healthy again haha...
sorry, what's happening on Wednesday?
RL_sparky
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sb4
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Is there anyway to access Prustys talk after it has occurred? I understand it is sold out, for lack of a better word.