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An Announcement from Ron Davis, PhD

Ben H

OMF Volunteer Correspondent
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1,131
Location
U.K.

An Announcement from Ron Davis, PhD, Professor of Biochemistry and Genetics at Stanford University, Director of the OMF Scientific Advisory Board and Director of the Stanford Genome Technology Center.​

The ME/CFS Collaborative Research Center at Stanford is pleased to announce the 4th Annual ME/CFS Working Group Meeting on the Molecular Basis of ME/CFS. Due to Covid-19, this will be a virtual meeting, and we are adding a number of guests that are involved in the disease. The goal of the meeting is for the scientists to update each other on their progress and to strategize on how to make faster progress towards diagnosis, treatments, prevention and a cure. The meeting will be held from Tuesday, September 8 through Friday, September 11. There are 77 registered participants. Stanford University will be supporting the Zoom link.

Unfortunately, the Community Day at Stanford has been cancelled due to the pandemic. However, after our Working Group meeting we will investigate whether we can produce a series of videos that will be accessible to everyone. Hopefully next year we will all be able to get together again.

As always, thank you to OMF for their dedicated support.​
 

Janet Dafoe

Board Member
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867
@Ben H Do you know if anyone is going to be live tweeting during the meeting?
As usual, This is a science meeting and it is confidential so that scientists can talk about unpublished data and ideas and hypotheses that aren’t necessarily perfectly well formed. They cannot talk about their unpublished data without risking not being able to publish it or not being able to get grants if it’s all over the Internet. So everyone involved has a confidentiality agreement that they agreed to by signing on. As the announcement says we are going to do our best to get some videos created to send out to the public afterwards, in an effort to send out information like we do in the community symposium day. The same is true on the science days at the Invest in ME conference in London.
 
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jaybee00

Senior Member
Messages
558
Hi @Janet Dafoe,

I thought one of the distinguishing points about the Open Medicine Foundation was that it was “Open” i.e. they encouraged data sharing and would be “open” with their data.

Also if Fluge and Mella are participating, would appreciate an update on the cyclophosphamide study—are patients still in remission, etc., and plans for phase 3 study.

Thank you.
 

Janet Dafoe

Board Member
Messages
867
Hi @Janet Dafoe,

I thought one of the distinguishing points about the Open Medicine Foundation was that it was “Open” i.e. they encouraged data sharing and would be “open” with their data.

Also if Fluge and Mella are participating, would appreciate an update on the cyclophosphamide study—are patients still in remission, etc., and plans for phase 3 study.

Thank you.
Ron’s philosophy is definitely for open data. However we cannot sacrifice the ability to publish and get grants! As soon as that risk is over the data From Ron’s team and the OMF funded collaborative research centersis published on the website that is available to researchers. Also this meeting is for researchers all over the world. They are open with their data with each others so that they can make hypotheses and freely speak with each other. It’s not really useful to have a meeting and only talk about things that are already published!
 

nyanko_the_sane

Because everyday is Caturday...
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655
Ron’s philosophy is definitely for open data. However we cannot sacrifice the ability to publish and get grants!
Totally makes sense to me. Creating a forum to pool knowledge and resources to get the science done is the top priority. We will all benefit from this collaboration in time.

It was good to see everyone last year on the community day, I hope we get the chance to meet again next year.
 

Gemini

Senior Member
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1,176
Location
East Coast USA
Meeting Agenda:
1599766418630.png
 
Messages
88
Sorry, these meetings aren’t recorded. They are confidential working meeting for invited participants only. It’s a science meeting in which they feel free to discuss ideas and unpublished data.

Can we please get a minor update on the metabolic trap? Has the theory been disproven, or corroborated over the past 8 months or so? I’m aware of the trial in Sweden.

Thanks Janet. Much love :)
 
Hi @Janet Dafoe @HTester ,

Would it be possible to get an update on the metabolic trap/kynurenine trial? Also, on a semi related note, why hasn't there been any media coverage on the trap? With the OMF in a trap of its own regarding securing funding from US government agencies, why not take the opportunity to say to media outlets that you may have a treatment for "Post-Covid Syndrome". I'm not saying you have to say it's "probably correct" , at this point just getting the word out that this theory exists, I feel would help legitimize this disease in the public/government's eyes.
 

RL_sparky

Senior Member
Messages
378
Location
California
What trial in Sweden? I’m not aware of this, could you please fill me in?

https://www.omf.ngo/2020/08/05/kynurenine-trial-in-me-cfs/

"New methods have been developed under Dr. Bergquist to measure the metabolic pathways relevant to Kynurenine. These new methods are used to identify people with ME / CFS that have low Kynurenine in the plasma. This method will also be used to monitor the metabolic effects of Kynurenine supplementation during the trial."
 

bthompsonjr1993

Senior Member
Messages
172
@RL_sparky hooooly crap that’s awesome. I can’t believe I’m only just now learning about this. If they believe in this idea enough to find a trial of it, you would think that Ron would have definitely tried adding Kynurenine to the nanoneedle and seeing what effect it has, right? I haven’t heard of him doing that but surely he must have, it seems like a pretty obvious thing to do
 

Badpack

Senior Member
Messages
382
@Rufous McKinney same. Hard to believe that after 2 years (first talked about it in 2018 IIMEC Conference) he didnt even test 1!!!! other disease to even check if the signal is cfs specific. There is clearly a lot he doesnt tell us. At this point I think the nano needle is a deception. Maybe to get a research grand for cfs or something. Otherwise i cant explain myself the lack of interested in it by Ron.
 

raghav

Senior Member
Messages
809
Location
India
Well frankly it is nothing but a micro version of a multimeter. If they had wanted to they could have tested the serum of ME/CFS patients using simplified ohm meters.