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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

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concepcion

Senior Member
Messages
118
Thank you for organising this wonderful conference, and jumping through all the technological hoops to make it available to all of us who could not go - @@Janet Dafoe (Rose49)@@AshleyHalcyoneH @@raeka@@Ben Howell. And thanks so much to all the researchers for the work you do, the great presentations. My brain hurts now, but nothing a summer beer can't fix.

All of you at OMF have my deepest gratitude for everything you do, have done, will do. Just extraordinary how far you've pushed things in such a short time, how many extraordinary minds you've inspired to join you, how many private donations you've lured your way. We just have to help you crack the code for big government funds and we'll beat this beast.
 
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Navid

Senior Member
Messages
564
Thanks to all for the symposium. So good to finally watch and hear productive discussion about our disease (in contrast to the horrible US Govt sponsored meeting, always excruciatingly painful to watch).

Wondering if anyone from OMF has been in touch with Ben Horowitz (Andreesson-Horowitz VC) about the research Ron is doing, particularly the technical product research/innovations. He is very involved in philanthropy; and as Ron discussed his work about bringing down Health costs, it made me think that this could be a cause Horowitz may want to get behind. Do Ron's (his teams') inventions all belong to Stanford? Wonder if that could be a stumbling block.

Just wish this kind of attention and brain power had been put behind this horrid disease 30+ years ago instead of being swept under the rug as a psychosomatic problem.

Once again my deepest appreciation to all working to solve this life draining disease.


https://techcrunch.com/2017/06/21/andreessen-horowitz-gets-a-new-general-partner-in-jorge-conde/

@Ben Howell @Janet Dafoe (Rose49) @JaimeS
 
Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Jesse2233

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Nickster

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
Grateful! This was an amazing event and so thankful for Ashley, Janet, Ron and everyone involved!
I beleive the rest of us need to share this information with everyone and that includes all physicians, clinicians and anyone in between. The more people that are exposed, the better the knowledge is shared. I shared this with one of my sons UCLA doctors and he is very interested. Doctors spent many years studying medicine and they thrive on new information.
Let's keep this going! Share this day with everyone!
 
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Alvin2

The good news is patients don't die the bad news..
Messages
3,024
I was a bit surprised no one today talked about the pyruvate dehydrogenase theory (at least i don't think so, i did spend a lot of time not all here).

Also i am aware of that 1997 homocysteine study, there was a 2016 followup that was not mentioned (its the reason i take B12/methylfolate)
 
Jill

Jill

Senior Member
Messages
209
Location
Auckland, NZ
I can't remember but did Ron do the obvious with the plasma + patients cells and add Rituxan ? I remember sumarin being discussed but don't know whether it's fallen out of my head or whether he didn't mention Rituxan . It's been driving me crazy all arvo here in NZ on a surprisingly Spring like winters day . Thanks
 
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Cam Newton

Messages
88
Alvin2 said:
You can get it at walmart :rofl:
You might just have to try every brand :woot:
Click to expand...
He did mention the exact bacterium I believe. You should be able to find it once the talks are put on YouTube.

I should say that I don't like how he said "it can't hurt", as I've gotten worse by taking seemingly innocuous supplements that messed with my gut. That being said he hasn't had that much experience with patients directly. And he is helping to save my life so I forgive him. :)
 
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Cam Newton

Messages
88
Jill said:
I can't remember but did Ron do the obvious with the plasma + patients cells and add Rituxan ? I remember sumarin being discussed but don't know what her it's fallen out of my head or whether he didn't mention Rituxan . It's been driving me crazy all arvo here in NZ on a surprisingly Spring like winters day . Thanks
Click to expand...
I've watch this talk, today, and his talk in London a few months ago. I don't recall him saying he tried rituximab on the impedance measuring device.
 
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Alvin2

The good news is patients don't die the bad news..
Messages
3,024
Cam Newton said:
I've watch this talk, today, and his talk in London a few months ago. I don't recall him saying he tried rituximab on the impedance measuring device.
Click to expand...
I really think they need to identify what is causing the block, it might be the key that they can work back from to elucidate the disease mechanism

Cam Newton said:
He did mention the exact bacterium I believe. You should be able to find it once the talks are put on YouTube.
Click to expand...
I agree, it was sarcasm

I should say that I don't like how he said "it can't hurt", as I've gotten worse by taking seemingly innocuous supplements that messed with my gut.
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True :bang-head:
And he is helping to save my life so I forgive him. :)
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very true :)
 
Jill

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Cam Newton said:
I've watch this talk, today, and his talk in London a few months ago. I don't recall him saying he tried rituximab on the impedance measuring device.
Click to expand...
Me neither. I watched last years invest in me DVDs and it def wasn't there. Haven't seen this years dvd yet. I hope they have been able to in some way. If the high molecular weight 'something' was an antibody ( which he said it wasn't), then you'd expect Rituxan to neutralise it ... .?????. Who knows eh?
 
Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Jill said:
I can't remember but did Ron do the obvious with the plasma + patients cells and add Rituxan ?
Click to expand...
It wouldn't work that way. Rituximab knocks out the B cells that make the cells that make the autoantibodies (or something like that) - and the whole process takes months before the autoantibodies are gone. So, if you applied Rituximab to a B cell, presumably it would kill it. And maybe it wouldn't affect other cells at all.

ETA: sorry just read your last post @Jill. I see what you're saying, applying Rituximab could help rule out the possibility that it's having an effect besides killing B cells.

Re the probiotic, yes I think it was bifidobacteria too. My ears pricked up because I've just started using Vivomixx (=VSL#3) which contains bifidobacteria and I think it helps with digestive system issues and also seems to help reduce fatigue. Earlyish days but I'm liking it. I know others have had problems with this product though.
 
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