Community Symposium on the Molecular Basis of ME/CFS Sept 11 2026 (Stanford/Ron Davis)

Chandelier

Chandelier

Senior Member (Voting Rights)
Zoom webinar registration:
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Welcome! You are invited to join a webinar: Community Symposium on the Molecular Basis of ME/CFS. After registering, you will receive a confirmation email about joining the webinar.

On behalf of Dr. Ronald Davis, the Stanford Genome Technology Center is pleased to host a virtual Community Symposium on Friday, September 11, at 8:00 AM. The symposium will feature a series of presentations from distinguished speakers, who will share the latest ME/CFS research updates and...
stanford.zoom.us stanford.zoom.us

Community Symposium on the Molecular Basis of ME/CFS​

On behalf of Dr. Ronald Davis, the Stanford Genome Technology Center is pleased to host a virtual Community Symposium on Friday, September 11, at 8:00 AM.
The symposium will feature a series of presentations from distinguished speakers, who will share the latest ME/CFS research updates and insights.
We hope you will join us for this informative event!
 
NelliePledge said:
Ten years on given all the enthusiasm (hope) generated among the ME community at the time is there any substantive progress any of this group have delivered.
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To piggyback off of this, is there a reason why Dr. Davis isn’t involved in the Decode/Sequence ME efforts? Given his background in genomics, this seems like a natural fit for him.
 
Possibly James May said:
To piggyback off of this, is there a reason why Dr. Davis isn’t involved in the Decode/Sequence ME efforts? Given his background in genomics, this seems like a natural fit for him.
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Would it work? I'm not sure what age exactly Dr Davis is but he does look frailer these days.

The Decode/ Sequence work is based very clearly in Edinburgh / Oxford. Do we not need more groups focussed. on different parts of the condition doing different aspects of investigation?I always hoped that The OMC would find a way of continuing with the blood work that they started several years ago. I know there were issues with .......can't remember name moving on, was it to Irvine?

Did Dr Phair's work come to any results? I know lots of leads peter out but did anything hopeful on the " metabolic trap" that the OMC funded come out at Stanford? It all seems a long time ago.

Will be interested to see who and what is presented on Sept 11th.
 
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Decode has been in the pipeline since 2018, Dr. Davis has been formally researching ME since at least 2013. While Decode is based in the U.K. I am struggling to understand why a world renowned geneticist, who proposed mapping the human genome to the federal government back in the 1970s, seems to have no interest in WGS and its analysis for ME. Building on what Hutan mentioned, there should be a network of peers who could help, as well as possibly parties willing to fund the project, which could have aided the Decode and Sequence ME projects.

Binkie4 said:
Do we not need more groups focussed. on different parts of the condition doing different aspects of investigation?I always hoped that The OMC would find a way of continuing with the blood work that they started several years ago.
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I would rather not discuss the viability of Dr. Davis’ work funded by the OMF. I have expressed my concerns about it in the past. At this point, everyone has their opinions about it. I don’t feel reiterating old dialogue will add any value to the conversation, and will just resort to people coming out of the woodwork with bad faith arguments and ad hominem attacks.

Binkie4 said:
Did Dr Phair's work come to any results? I know lots of leads peter out but did anything hopeful on the " metabolic trap" that the OMC funded come out at Stanford? It all seems a long time ago.
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The last thing I saw about the Metabolic Trap was that they weren’t able to be validate it in patient cells, and they have since pivoted to something called an Itaconate Shunt/Trap.
 
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Binkie4 said:
The Decode/ Sequence work is based very clearly in Edinburgh / Oxford. Do we not need more groups focussed. on different parts of the condition doing different aspects of investigation?
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But as Chris P emphasises, DecodeME is just one aof several genetic projects all generating complementary data. There is Astrazeneca, there is Michael Snyder and Maureen Hanson, there is the Leiscester group looking at X suppression, and more. And that is just the beginning. We now want people to look in detail at the gene loci, as James Cox is doing. There is a vast are opening up where we have firm leads. None of the stuff from OMF has generated a firm lead as far as I can see.
 


DATE September 11, 2026
TIME 8:00 AM PST
FORMAT Virtual • Zoom



​
Each year, the Stanford Working Group Meeting brings together the world's leading researchers to share findings and accelerate progress on ME/CFS.​
This September marks a milestone: the 10th Annual Meeting.​
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As in past years, Dr. Ronald W. Davis and the Stanford team are opening the final day to the broader community.​
On September 11, patients, caregivers, clinicians, and anyone with a stake in this science is welcome to join virtually.​
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​
A MESSAGE FROM DR. RONALD W. DAVIS​
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"I am pleased to announce that this year's 10th Annual Stanford Working Group Meeting on the Molecular Basis of ME/CFS will include a virtual Community Symposium again this year, in which patients, caregivers, doctors, and any other interested parties are invited to attend."​
​
Ronald W. Davis, PhD​
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OMF Scientific Advisory Board Chair &​
Director of the ME/CFS Collaborative Research Center at Stanford University​
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FEATURED SPEAKER​
Danielle Meadows, PhD​
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VP of Research Programs and Operations​
Open Medicine Foundation​
​
"The Clinical Trial Landscape in ME/CFS and Long COVID"​
​
Registration is required. The link you receive is tied to the email address you register with and cannot be shared. Space is limited, so please register in advance.​
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The agenda will be announced soon.​
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IN CASE YOU MISSED IT​
​
OMF's Clinical Trials Network (CTN Lite) Survey​
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OMF is asking our community to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. The survey takes 20–30 minutes and is anonymous. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured.​
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Open to people with ME/CFS and caregivers completing on a patient's behalf. Deadline: September 18.​
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​

 
Chandelier said:
OMF is asking our community to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. The survey takes 20–30 minutes and is anonymous. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured.Open to people with ME/CFS and caregivers completing on a patient's behalf. Deadline: September 18.Take the Survey
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I filled it in

The descriptive part, i.e. how PEM is experienced, is not too bad. Extra points for trying to separate immediate symptoms from delayed ones. Though it gets a bit confusing when they call the immediate symptoms PESE and the delayed ones PEM. I can see where they're coming from but I think the usage of the terms is quite messy enough already, with some people having strong views on which one means what. Trying to redefine the terms yet again just adds to the confusion. Also, beyond the semantics, while they separate PESE and PEM early in the survey, later in on they mix them together again in a question about what people think triggers them, as if everything that triggers PESE necessarily also triggers PEM

But my main issue with the survey is that they appear to be looking to turn PEM into an outcome measure for interventional studies. How often, how severe, how long to return to baseline, that sort of thing (at least I think that's what they're aiming at). To me that is the sort of thinking that feels intuitive - of course we all want less PEM - but that's just not going to work in in practice. Subtle changes to pacing alone are enough to play havoc with any such PEM outcome measure. Better to go for a sustainable increase in overall function. That would be a reasonable proxy for less PEM anyway

The survey has spaces for writing comments, which I did, though I suspect they're already strongly committed to the path they're on
 
V.R.T. said:
It's been almost a year and there's still no sign of the James PET paper we saw data from at last years conference!
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I emailed her recently, and she said she’s planning on submitting the publication for review in the next few months. So, hopefully we’ll be able to see it at the end of this year or early next year depending on how long peer-reviewing takes.
 
Joshua Leisk getting an hour this year is an absolutely ridiculous . How unserious are these people? Ron Davis endorsing this is sad, absolutely depressing to see how much hope he originally brought to now platforming fitness gurus.

Also Vindara Health seems to be a for profit online pharmacy.

Congrats this “conference” is a farce. Stanford having their name on this is a sad state of affairs. Another way to push away real researchers from ever taking this seriously is platforming quacks.
 
jonathan_h said:
Another year where Joshua Leisk is an invited speaker at the symposium. So disappointing. These are the people whose judgement and scientific insight we’re counting on?
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ChronicallyOverIt said:
Joshua Leisk getting an hour this year is an absolutely ridiculous . How unserious are these people? Ron Davis endorsing this is sad.

Also Vindara Health seems to be a for profit online pharmacy.

Congrats this “conference” is a farce. Stanford having their name on this is a sad state of affairs.
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For reference, Leisk is the creator of the so-called Born Free Protocol. He’s a fitness trainer that sells expensive supplements.

Thread for the protocol.

Thread with posts by Leisk.
 
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