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

Wow, seeing someone get a platform at this conference who does not have relevant training, expertise, or publications paints a dismal picture of ME/CFS research.

It’s incredible to think a person with Ron Davis’s education and research achievements could take Leisk’s scholarship seriously.

Are there no better projects to spotlight at this conference?
 
Mij said:
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".
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From the same November 28, 2025 blog https://www.whitneydafoe.com/mecfs/?post=talking-again-in-2025

I started eating again in 2024. After 11 years not eating a crumb of food or even drinking a drop of water. I got all fluids and nutrition from tubes inserted into my body. For 11 years.

In 2025 I have another big improvement to announce.

I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!
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December 9, 2025 he posted this on X




@DafoeWhitney
Whitney Dafoe

@DafoeWhitney

I've had a few "better days" after a long few months of downward spiraling. And it feels SO good to get things done! Even mundane things like emails. I feel so alive! But then as the day goes on it starts to fade, I descend back into the fog and it's so heartbreaking. #MECS
11:00 AM · Dec 9, 20257.4KViews
 
I asked Joshua Leisk how long he had "severe ME/CFS".

His reply to me:
"I was “lucky” - I was only bed-bound for 3 months, followed by a 2 year slow grind back to a functional state, and then 15 years of gut and other residual issues .I wouldn’t wish it on anyone, which is why I’ve chosen to do all of this."

to add:
"My trigger was EBV, yes. After tick bites, mould, doxycycline for acne, childhood trauma and other patterns you frequently see associated. I also had hEDS prior to ME/CFS and lost it after recovery"

This gave me some insight.
 
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Silip said:
Ron Davis now posted the program for the public lectures on friday:

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For me personally there are lots of up and downs in this programm.

While there are talks which are most certainly are going to be a waste of time, like the ones from Kaufman or Liu, there are also talks I'm personally looking forward to, e.g. the ones from Beentjes (worked on DecodeME), Wust, Velasco and Armstrong.

Seeing that there are also reseachers who I personally rate as more credible makes me even more disappointed that they invited Leisk and give room to people like Kaufman who hypes up another useless treatment every few months, as the affiliation with such untrustworthy and unscientific actors also casts a bad light on the more reputable researchers who are there.

Furthermore, while thinking this is most possibly a nothing-burger, I still wonder how Mr. Robinson can see possibilities for car-t-cell therapy in an illness where you don't know IF there are targets for this let alone which targets could be interesting.
Maybe this is just my lack of medical education speaking and please correct my if I'm wrong, but this doesn't seem to make much sense to me.
 
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ryanc97 said:
The fact no Fluge and Mella are involved is confusing to me. Surely given their results everyone would want to collaborate with them given they are the only researchers with the strongest relative results in trials. Guess each researcher has their own agenda..
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I think Fluge and Mella used to be involved with OMF and aren't anymore for whatever reason. Others may correct me if I'm wrong.
 
V.R.T. said:
I think Fluge and Mella used to be involved with OMF and aren't anymore for whatever reason. Others may correct me if I'm wrong.
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F&M are on the OMF scientific advisory board

www.omf.ngo

Scientific Advisory Board - Open Medicine Foundation

Ronald W. Davis, PhD, Chair of our Open Medicine Foundation Scientific Advisory Board, brought together world-renowned researchers with a track record of innovation and success to take on the End ME / CFS Project. As part of this board, they are contributing their time, expertise, and brilliant...
www.omf.ngo www.omf.ngo
 
In your opinion, which talks do you think are most likely to offer something new?

My time is very limited due to ME, so I don't want to waste it on platitudes and repetitions of long-known findings. With all due respect, I don't need presentations from researchers who will just present their usual 4 or 5 well-known and often years old studies again without providing new insights.
 
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