Sept 21 - Stanford Working Group Meeting

[Learner1]

Does anyone know about the content that was recently presented at the Stanford OMF Working Group meeting on 9/8-9/10/21? Looks like some interesting and new topics were discussed.

 

[dylemmaz]

janet said on twitter that ron is writing a synopsis of the event but it would take a few days before it was finished (that was a few days ago)

 

[wabi-sabi]

I can't wait to see it! This gives me such hope.

 

[Learner1]

janet said on twitter that ron is writing a synopsis of the event but it would take a few days before it was finished (that was a few days ago)

These were several unrelated topics. Hoping that he provides a summary of each, since many of us are already experimenting with each.

 

[Rufous McKinney]

Looking forward to our German Cure.

I really think that's whats going to be the first, major "treatment"- filter that SOMETHING out of our blood, so we can feel less sick. the autoantibodies.

 

[perrier]

I think we are still at the various theories stage, tragically. But I would love to be corrected and told I am wrong.

 

[Rufous McKinney]

I think we are still at the various theories stage

Oh I know: thought I"d toss that in there since Dr Carmen S. will be presenting.

I know they network at these meetings.

I wish we could have a giant powow to discuss how to gather all the theories and sew them together into a neat bow.

I wish the research felt less "random". I wish we had more organized Big Picture Plan for solving this.

I hope the system comes thru for us. For everyone, here, who suffers.

 

[Treeman]

Is there going to be a video of the presentations released?

 

[Diwi9]

Is there going to be a video of the presentations released?

I believe this was a closed-door meeting, so probably no video.

 

[Learner1]

Perhaps we can collect, one by one, the information from these people here?

 

[Martin aka paused||M.E.]

Perhaps we can collect, one by one, the information from these people here?

I'm friends with one of them but he is also very strict on what he can tell and what not. When I'm more stable and out of the crash I will see what came out. But he told me it was very productive and a big step forward. So I'm excited to hear what he has to say.

 

[Learner1]

I'm friends with one of them but he is also very strict on what he can tell and what not. When I'm more stable and out of the crash I will see what came out. But he told me it was very productive and a big step forward. So I'm excited to hear what he has to say.

Well some clues would be helpful. I have learned a lot at these symposia which are greatly helped my progress. Getting no information means no help.

 

[Rufous McKinney]

The Polybio folks were not there?

 

[Martin aka paused||M.E.]

The Polybio folks were not there?

No and have to say that I'm a bit frustrated about that.

 

[Martin aka paused||M.E.]

Well some clues would be helpful. I have learned a lot at these symposia which are greatly helped my progress. Getting no information means no help.

Yes, I do my best.

 

[Marylib]

Hopefully we'll hear something before long. I hope Ron doesn't have to do all the work himself with the summary. But that's how these things go, unless OMF sponsored it? I'm sure Janet, Rivka, Mary Dimmock and Lily Chu will do their best to let us know.

 

[Marylib]

In terms of meds, maybe variations of Kuvan and Biopten for PKU -ish metabolic problems? BH4 deficiency. Some of the speakers are presenting what it out there already. The discussion would have been fun to hear.
https://acrabstracts.org/abstract/p...ed-with-crossing-the-blood-brain-barrier-bbb/
Ros puts these abstracts up and it's a good place to follow breadcrumbs, and I had forgotten about the document attached. I really like that one. I think the IACFS/ME summary is on the forum elsewhere? And the mysterious BC007
https://berlincures.de/pipeline/
http://www.drvallings.co.nz/abstracts

 

[Learner1]

In terms of meds, maybe variations of Kuvan and Biopten for PKU -ish metabolic problems? BH4 deficiency. Some of the speakers are presenting what it out there already. The discussion would have been fun to hear.

Agreed. I've been taking Kuvan with some success for over 2 years without a diminishment of benefit. I believe it decreases peroxynitrite production, increases nitric oxide and supports catecholamine production. When I told my ME/CFS specialist and my neurologist that I was taking it and it benefited me, they were excited about it and said they had thought it might help other patients but they could then by trying to get insurance approval. It sure would be nice to understand what the ME/ CFS researchers are thinking about it.

Ros puts these abstracts up and it's a good place to follow breadcrumbs, and I had forgotten about the document attached. I really like that one. I think the IACFS/ME summary is on the forum elsewhere? And the mysterious BC007

following bread crumbs can be extremely productive. It can be risky, but that's why it's good to have good discussion about it, so each of us can decide for ourselves in concert with our doctors. No information is what gives us in trouble.

 

[Martin aka paused||M.E.]

And the mysterious BC007

Costs 20.000€ per infusion

 

[bensmith]

Its just one infushion right? In america i’m used to everything being like this type of cost lol.