Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[mango]

Some of Alan Light's slides:

http://s1377.photobucket.com/user/greenmango/library/OMF Symposium 2017-08-12/Alan Light

 

[jpcv]

antiinflamatory diets( low gluten/low lactose.)+ probiotics are the way to go

 

[Ben H]

GREAT panel discussion eh?


B

 

[leela]

GREAT panel discussion eh?


B

most excellent!

 

[leela]

very hopeful answer from Naviaux regarding mitochondrial signalling!

 

[Rrrr]

@leela what did he say? i missed it.

 

[Rrrr]

did a researcher on the panel say *not* to do a ketogenic diet because the body may be doing what it is doing (metobolicly) as a protective mechanism?

 

[Sushi]

Question: What does Dr. Naviaux "mitochonrial cocktail" consist of?

 

[A.B.]

My feeling on this symposium so far: we're so close to understanding, yet so far. We need society to understand how important it is to provide more funding. By now we have proven over and over that there is a serious illness, or a group of illnesses that need to be understood.

 

[Rrrr]

suramin discussion fascinating.

 

[Rrrr]

suramin prevents lots of infectious viruses in cells. did i get that right?

 

[Ben H]

Question: What doe Dr. Naviaux "mitochonrial cocktail" consist of?

I think from prior reading it was the 'usual suspects'-Coq10, L carnitine etc.

Might be wrong.


B

 

[Wonko]

suramin prevents lots of infectious viruses in cells. did i get that right?

In vitro (?) yes - if it was possible to get without moving to Africa and catching sleeping sickness then I would want to try it.

 

[leela]

@leela what did he say? i missed it.

If I understood/recall correctly, he said that rather than frank, primary mitochondrial disease, where mito function is broken, in ME it is a secondary
mitochondrial disorder wherein the mitochondrial cells are signalled to retask from producing energy to cellular defense etc.. He feels this is reversible, unlike in primary mito disease where these functions are defunct.

 

[Jesse2233]

I think as patients and activists we need to find a way to help Naviaux accelerate these Suramin trials. It's he lowest hanging fruit to treatment besides Rituximab and Cyclophosphamide

 

[leela]

the thing about suramin i read is that it can help when there is *not* neurological involvement.
as a neuro-impaired person, i'd like to hear more about their findings.

 

[NelliePledge]

great timing of the lunch break just in time for the London 2017 5000 metres keeping my fingers crossed for MoFarah

sorry not meaning to be flippant there but I was getting a bit overload with info so its good that we can go back to the videos in september when they're live

it seems like they are definitiely putting together pieces of the jigsaw as a group obvs others included who couldnt be there but looks like Stanford 2017 (building on discussions in London) is a really good step forward

 

[Hopeful1976]

Any treatments mentioned? Did I hear something about amino acids and digestive enzymes from Chris Armstrong?... (sorry, but I'm flagging here in the uk)...
Thank you omf. For being my hope.

 

[Manders]

Any treatments mentioned? Did I hear something about amino acids and digestive enzymes from Chris Armstrong?... (sorry, but I'm flagging here in the uk)...
Thank you omf. For being my hope.

@Vicki Cole thats what I heard too

 

[Sushi]

I think from prior reading it was the 'usual suspects'-Coq10, L carnitine etc.

Can anyone who is there ask Dr. Naviaux?