Community Symposium on the Molecular Basis of ME/CFS Sept 11 2026 (Stanford/Ron Davis)
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vortex0288
Established Member
I think at this point, a central problem I can identify is the lack of a professional, dedicated group whose sole goal is the synthesis and convergence of the assorted findings and output of the various silos/groups which have come to exist. It's evident that everyone is very busy doing their work, and are not going to have time to understand another group's findings on a deep level.
At conferences, I'll see one research team present their work, another one present their work, but I do not really ever see a bird's eye view of "Collectively, what could all this mean? Where does it point us overall?" Such high level fundamental questions I think are very important.
So I hope at a presentation like this I don't just necessarily see Phair discussing the itaconate shunt, Naviaux discussing the CDR, without a meta-conversation of "where could all this converge" or "what can we take from our separate efforts put together at this time?".
Does anyone else think/feel this way? There are so many individual rabbit holes that we can go down, practically indefinitely, without stopping to think on a more fundamental level. And I fear such deeply siloed conversation.
It's to the point where if I had the money, I wouldn't want to donate it to organizing a particular study or topic. I'd want it to go toward a focus on convergence regarding the findings of 50 different groups each with their own ideas, theories, and data.
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V.R.T.
Senior Member (Voting Rights)
Wow, wonder what the hold up in submitting was. She said last year it was going to be out by early this year.
neophyte32
Senior Member (Voting Rights)
It is actually surprising that Davis didn't take an interest in DecodME. Was it because he wanted to quickly find a cure relying solely on his intuition? Like Klimas (nothing personal), he has been receiving funding since 2013 but with what results ?
They are brilliant scientists, but damn it what is going on with ME/CFS ?
As for Joshua Leisk and the Born Free Protocol, it makes sense that he was invited, since Whitney Dafoe promoted it quite widely, saying that it had helped him.
They are brilliant scientists, but damn it what is going on with ME/CFS ?
As for Joshua Leisk and the Born Free Protocol, it makes sense that he was invited, since Whitney Dafoe promoted it quite widely, saying that it had helped him.
On that basis, they should invite some brain retrainers and acupuncturists and homeopaths who have people who say they helped and even cured them. Leisk has not as far as I know published anything peer reviewed or anything that makes scientific sense to much more knowledgeable people than me.
How do you know he didn't take an interest? He may have been very interested, but not in a position to do such a study himself.
neophyte32
Senior Member (Voting Rights)
I completely agree. I had a pretty vicious argument with Leisk on X. He’s a snake-oil salesman.
What I meant was that it makes sense because he’s part of the inner circle around the Davis family. It’s disgraceful.
With all the respect I have for Ron Davis, I think he has had plenty of time to help move ME/CFS research forward, but he has gone badly down the wrong path.
And this is where we’ve ended up: the Born Free Protocol.
It’s a massive failure, just like with Klimas. Scheibenbogen may be next. All the high-profile scientists.
Sorry, I’m angry.
neophyte32
Senior Member (Voting Rights)
I honestly don’t know. I’m just quite frustrated. I take back what I said then — you probably know much better than I do.
I'm with you in being frustrated and disappointed after all Ron Davis's enthusiasm and promises. He's an elderly man clutching at straws in a desperate attempt to cure his son on limited funding and resources. Very understandable, but no necessarily a sound basis for moving the whole field forward.
SugarSquared
Senior Member (Voting Rights)
Wow, reading through the Born Free Protocol thread has made me lose further trust in the OMF and Ron Davis.
ChronicallyOverIt
Senior Member (Voting Rights)
It should be noted, a mistake I made last year, OMF has no involvement in this conference.
SugarSquared
Senior Member (Voting Rights)
That’s confusing, because they are promoting it on their Instagram (see below). I guess I assumed that because of Ron Davis’ involvement. Thanks for the correction.
Utsikt
Senior Member (Voting Rights)
Mij
Senior Member (Voting Rights)
Whitney
"I don't know how my stomach has started working again or how I started being able to talk again. It is most likely from Joshua Leisk’s Born Free Protocol. I started his protocol right before these changes started to happen and nothing else was changed in my medication or physical routine at that time, so I feel confident, but not certain his protocol is responsible. The Born Free protocol is very complicated though (really overwhelming for most people, myself included) but hopefully there will be better guides put together in the near future as well as training other doctors to help patients through the protocol. But please don’t just run out and start doing this protocol blindly or push yourself into it, it needs to be done right - in the right order and in the right way or you could severely harm yourself. And it is still experimental and may not be for everyone, remember to always listen to your body and do what feels right to you".
"I don't know how my stomach has started working again or how I started being able to talk again. It is most likely from Joshua Leisk’s Born Free Protocol. I started his protocol right before these changes started to happen and nothing else was changed in my medication or physical routine at that time, so I feel confident, but not certain his protocol is responsible. The Born Free protocol is very complicated though (really overwhelming for most people, myself included) but hopefully there will be better guides put together in the near future as well as training other doctors to help patients through the protocol. But please don’t just run out and start doing this protocol blindly or push yourself into it, it needs to be done right - in the right order and in the right way or you could severely harm yourself. And it is still experimental and may not be for everyone, remember to always listen to your body and do what feels right to you".
ChronicallyOverIt
Senior Member (Voting Rights)
Yes Ron Davis is “hosting it” but OMF does not endorse it.
I emailed OMF last year voicing my disappointment and they said they take no role in this event. You will notice no logo or promotion from them.
Yes, it is problematic Ron is the face and scientific chair of OMF, but officially OMF is not part of it.
ChronicallyOverIt
Senior Member (Voting Rights)
Oh well this is different than last year! Grossly disappointing from a charity I donate to. Anyone that has donated should email them as well.
Jonathan Edwards
Senior Member (Voting Rights)
You may be relatively new to S4ME but that is what we have been thinking even since before it began.
But that is free. We do it here for free. Any money needs to go to the very few good projects.
The Born-Free-protocol is among the worst quackeries around ME and everyone who works with Leisk massively loses credibility in my eyes.
People who behave like Leisk has any credibility, simply because there are a few individuals who claim to have benefited from his protocol, are putting themselves on exactly the same level as the BPS brigade and the brain retraining advocates.
And for anyone who doesn’t understand what I’m getting at: with a chronic condition that is often fluctuating and dynamic, it’s nearly impossible that there aren't at least some people who feel a little better while participating in a month-long protocol.
Also just like the Brain Retraining people Leisk did the motte-and-bailey thing. First loudly claiming his method has the potential to cure a large amount of people and then if others point out that this obviously isn't true he quietly steps back to saying that some people can improve with it or calling it supportive or "disease modifying".
The "Born-Free" Protocol even manages to bring another aspect to this, it lets people take so many different supplements that it is again almost impossible that among hundreds of people you don't find a few people that profit of some of it or correct a deficiency by accident.
And all of this is just about why everything about Leisk and that protocol is sketchy and that it has nothing to do with science, I haven't even started talking about the obviously dangerous aspects of the protocol.
Lastly, does anybody know how I can contact Dr. Davis or others who are responsible for this conference and the inclusion of Leisk; maybe per an Email or contact form? I doubt that they will listen but I still feel the need to express my displeasure to them and to let them know that, as a patient, the inclusion of obvious pseudoscience in ME conferences deeply troubles and discourages me.
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